So. Anyone dealt with Hodgkins Lymphoma before?

That port is so handy.  Make sure you keep up with the flushing schedule.  Even after all your cancer is handled, that thing is handier than a USB port.  Blood draws, IV injections, heroin... well, maybe not heroin, but you get the picture.

I saw this and hope that it's a good omen. Also they said no smoking cannabis, probably didn't say no consumption. If you need any edibles recipes let me know and I'll message you. 

In reply to Captdownshift (Forum Supporter) :

I need the enzyme that converts edibles to 11deoxy whatever the berkeley in my liver. While it's a fun party trick to eat ridiculous amounts of edibles with no effects,  it's also kind of annoying that they have no effect.  I've been around a lot of the big deal players in the cannabis scene over the last 15 years,  good working relationships with a few even to this day,  nobody's edibles have any effects whatsoever.

Because if it wasn't weird medical stuff, it wouldn't be my bloodline. 

Have you tried sublingual drops? 

In reply to Marjorie Suddard :

Yup.  Drops,  candies,  infused foods, water soluble powders,  alcohol tinctures,  converted canniboids like HHC, hhcp, thcp and thcv, rosin gummies, freaking Joey Diaz stars of death.  Homemade,  black Market,  medical market,  recreational market, nationwide companies and micro artisan groups. 

I have some calls out looking for Charlotte's Web style low THC high CBD/Cbdv strains as well as a whole plant extract, but I'm looking for those as more of a nausea cure. 

Without getting derailed into a long winded rant on the state of the industry,  things were much better, albeit it considerably more expensive,  as a patient and customer in the times before the pseudolegalization we currently have. 

In reply to RevRico :

Agreed. Also looking for Charlotte's Web for a family member who is in Hospice. It's a weird, weird landscape on the legal side--and I say that as a Boomer who used to pay the "smoke one with the creepy guy selling while trying to keep his giant dog's nose out of my crotch" tax.

I missed this when you first posted.  my only "experience" has been watching a youtuber go through diagnosis and 6months of treatment starting ~9months ago... although his was Stage 1; iirc.

also, it sounds like some of your baseline health is different than his; but perhaps having another person's experiences might be helpful... even though you've got a plan started?

good luck with your treatment, and ancillary health journeys.

I would just like to note,  I started this thread the day my biopsy results came back.  The biopsy my pcp ordered.  I waited a week with no phone call from his office,  finally called his office,  and his nurse practitioner put me in touch with oncology.  

I haven't heard a word at all from my pcp since he ordered the tests.  Not sure if that's standard procedure,  but I take it as a dick move. 

----

Anyway,  this doesn't need moved to the build thread forum,  but I'm going to treat it as one.  Highlight the ups and downs of treatment,  and the ups and downs of corporate doctors.  

Side note, after spending $4100 we really didn't have laying around to spend,  I've hit my out of pocket max for my insurance for the year.  I also,  after spending the money,  found out I'm poor enough to qualify for state insurance,  which would have covered my out of pocket.  So a big berkeley you to the wife's case manager,  who has been fired,  for not doing her damn job. New caseworker is awesome. 

But since I'm at my max out of pocket,  once I see how bad the chemo beats me up and what restrictions go in place with it,  I'm going to push to get a bunch of other things done that I've been putting off.  Getting my septum repaired again so i can actually breathe through my nose,  another sleep study so I can get a Cpap machine or whatever they're using these days,  try to get my knees fixed as they've been without cartilage since I was about 13, look into hearing aids of some sort, just to try to maximize my insurance. I have a feeling it'll be a fight,  but I'm hopeful that maybe by the end of the year I'll be able to get a full night's sleep and wake up rested instead of exhausted,  because this perpetual exhaustion thing really sucks, especially since I gave up caffeine a few years ago. 

RSO from a CBD heavy, low THC strain would probably be a good place to start, and a RSO from a CBD/CBN/CBG strain for when you need sound sleep or relief to the point that a 6 hour nap that starts within the next 2 hours would be welcome relief. Beta caryophlene is also something to focus on as it bonds to different cannaboid receptors then other compounds. THC is overrated and though it fun, it takes you places that aren't productive, you can get the benefits sought without high amounts of it. 

If they offer you dronabinol for appetite, know that's it's a synthetic THC derived off of cannabidoids; your body MIGHT be resistant to it, but it also might not be.

If nausea gets bad, they might discuss Thalidomide. Yeah, THAT thalidomide. It's a very powerful anti-nausea/vomiting medication.

Good to hear you have a great case worker. Let her know you want to stretch that insurance as far as you can; good ones HATE INSURANCE COMPANIES and want to see them bleed even more than you do.  For hearing aids, look into the cheap versions that are basically just bluetooth earbuds that amplify sound- almost as good as the real things, but a literal hundreth of the cost.

They want you off tylenol because that E36 M3 smacks the liver something foul- my hospital doesn't even allow patients to have more than 3,000mg a day, lower than the FDA recommended of 4,000mg maximum; so if massage and chiropracty works, it berkeleyin works and do it. Has your oncologist referred you to a specialty pain doctor yet? You might wanna put that bug in their ear if you can get their motor mouth to stop.

In reply to GIRTHQUAKE :

Oncology is suggesting 2000 mg a day tylenol. I'm going to try it out this weekend, because I've been at 3000 or more for a while now. Really I'm hoping if the chemo works and shrinks the nodes, it should relieve some of my constant, obnoxiously annoying, sometimes crippling pain.

------

Had my "intro to chemo" today. Labs, meet the people, get the shpiel. I will say it looks a lot more comfortable than the setup at all of my dad's dialysis clinics. They'll even provide lunch.

I'm kinda looking forward to red tears, especially since they've been randomly popping up lately. Unfortunately neither my pee, nor any other fluids, will glow in the dark, slightly disappointed there, but I'll take red tinted I guess.

I also now have a standing bloodwork order for every Friday until the chemo is done.

It starts Monday, then every 2 weeks until the end of August, barring any complications. I guess on the upside it should only take 2-3 hours. 

Also talked to some friends at social security. Unless the Hosgkins doesn't respond to therapy, or I turn 55, or require use of a walker to get around, I can't get any financial help through there for either the cancer or the spinal stenosis. Kinda sucks, but oh well. There might be a loophole because I'm only 36 and spinal stenosis doesn't usually hit until the 50s, but it's a tricky loophole it sounds like. 

But if things go well, it's just another E36 M3ty, sober, summer. 

Well cycle one is done. About 3.5 hours today because I had to get checked out for a sinus infection I picked up over the weekend. So far not terrible. My seatbelt rubs both my port and the alien box on my stomach for tomorrow meds which was the most annoying part of the whole ordeal. 

So far I have stomached a Dave's single and a small orange cream frosty from Wendy's, which is more than I ate all weekend. 45 minutes later it's still staying in, so good sign I hope. 

I got to play teacher today too. My first trip to chemo, and a student nurse from Duquesne in her first in hospital practice thing. 

There does seem to be a miscommunication though. I asked for the images of my PET scan and only got the text summary. I want the pictures damnit.

Good luck with the treatment. 

If you have the urge to shout at a cloud, stop by. We will happily listen. 

In reply to RevRico :

Glad it's going well so far.  Keep it up.

Glad this is going well. Maximize the berkeley out of your insurance since you hit the limit. Still early in the year. Find a chiropractor that your insurance will cover.

You'll beat this. My roommate who was already a bit of a mess beat it 15 years ago. Hang in there.

So day after follows up. My premeds should have worn off around noon today, 2 anti nausea and a steroid. For breakfast today at 730 I had some toast and a different steroid I'm supposed to take for 3 days after treatment. 

I've had no nausea, I ate breakfast lunch and dinner, smaller portions than usual, but that's personal choice more than my body saying no.

I've had random bouts of mild heartburn throughout the day and annoying, long lasting bouts of hiccups. From looking around online about 25% of chemo patients get hiccups the day after treatment and it usually goes away after 24 hours. If it's still a problem tomorrow afternoon, I'll call my navigator and get a script called in to the drug store. 

As odd as it sounds, side from the hiccups, I actually feel better today than I have on a while. I think the steroids are inadvertently helping my back problems, because it hasn't hurt since maybe 2pm yesterday. This is going to be brought up with my physical therapist and my upcoming referral to a pain specialist. If I can take an oral steroid regiment instead of spine injections or high dose Tylenol, I would be a very happy camper. 

I'm not going to go all optimistic, but I was prepared to feel much worse today than I did. 11 more cycles to go, a lot can change, but I imagined the first one to be the worst one on a system shock kind of level, now 30 hours after treatment it really doesn't suck. 

And just because, pics of my alien 

This little thing is neat. They put it on towards the end of treatment, it quick pops a needle into the skin and leaves a little plastic tube behind. 27 hours after that, it injects is payload of stuff to help rebuild blood cells over 45 minutes, then beeps and you can take it off and toss it. Auto retracting needle means you don't need any special containers. It also saves a ride back to the hospital for another IV, which is the real bonus. 

In reply to RevRico :

I'm glad that you are feeling better than you expected! I was on steroids for a loooonnnngggg time a bit ago for a thyroid nodule issue. Other than wanting to eat a ton it made me feel really good, something about anti inflammatory and the not needing to sleep side effect rocks! 
That pump is an Omni pod. If I have read right that's basically the same device used for people with Type 1 Diabetes with different programming. The adhesive also looks different. My kid has worn one for years and they are very cool devices. 
Again glad your feeling alright! Sending positive thoughts your way. 

In reply to RevRico :

I had one of those Neulasta injectors on for 24 hours after my last leukemia treatment. Guess how much it was billed at?

In reply to DeadSkunk (Warren) :

I'm almost afraid.  $10k? 

I'll get one after every treatment, so 12 if there are no complications. 

In reply to RevRico :

$18K,,,,,,I about E36 M3 myself when I saw the statement. I only had it once, not a dozen like you're getting.

In reply to DeadSkunk (Warren) :

Ouch. Thankfully my insurance is good and my secondary is basically Medicaid, so I should be covered. I'm interested to see the final bill though. 

My PET scan was almost $16k, needle biopsy was 6k, meanwhile the port install was something like $12. Add in some other stuff, and the $4100 I put up initially was a downright bargain. 

Our hospital system uses the MyChart app, and I can see estimates of procedures, with asking price, what my insurance pays, and what my out of pocket was for it. If I hadn't grown up dealing with medical stuff I'd be shocked at some of the numbers. 

In reply to RevRico :

I didn't realize that MyChart has the costs in there. I'll have to go look up my total sometime.

In reply to DeadSkunk (Warren) :

If you hit the triple dash menu button on the top left and scroll down, there's a page for estimates. Odd, I have screenshots enabled, and it lets me take one of my actual medical stuff, but not the estimates page. 

In case you need it for anything, the triple dots on the top right of the screen, hit app preferences, and you can enable screen shots. Like this 

Marjorie Suddard said:

In reply to RevRico :

Agreed. Also looking for Charlotte's Web for a family member who is in Hospice. It's a weird, weird landscape on the legal side--and I say that as a Boomer who used to pay the "smoke one with the creepy guy selling while trying to keep his giant dog's nose out of my crotch" tax.

So I just had a flashback rereading this thread. My guy back towards the end of high school had a couple of pitbulls that were giant lap dogs. Go over, see the man, burn one, hang out with the dogs, leave. Well those little shiny happy person dogs would snake the bag out of my cargo pockets on my  way out the door. 

First time I thought maybe I missed my pocket and stuffed the bag in the couch by accident, but by the third time I figured out why they were always crawling around on our laps. I wound up carrying an empty bag that stuck out of my pocket on purpose just to trick them whenever I went over. 

They definitely were not kidding when they said constipation was a side effect of chemo. 

Still dropping weight though. 

Terrible heartburn, but the hiccups went away after 2 days. No script this week, but I'm supposed to ask before my next treatment. Those hiccups were brutal, bringing on heartburn and lasting for hours on end. 

My beard is starting to shed more than normal. 

But on the plus side, no back pain all week.