My cancer/health journey updates...

Bob002

Bob002

I'm not a noob anymore
Aight, since this got accidentally erased - I was waiting until I had a significant update to re-make it.

For those of you that are new here - I was diagnosed 12 yrs ago with thyroid cancer. I've had numerous surgeries, lost my teeth, and most recently had a seizure that has put me out of work.

GoFundMe

I did start a GoFundMe, which iis above.

As to the latest - I had an MRI on Tuesday. Finally got the results - no evidence of Mets or other abnormalities. So, gives me a little bit of relief.

Next up is a CT, Bone Density, and then Oncology. We'll likely be changing my chemo and HOPEFULLY i can start training some again.

And just so everyone can see what this would run... I've attached a couple estimates. Luckily my $24k chemo I was taking at the beginning of the year means I hit my deductible before the year even began.
 

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QuarterCircleForwardPunch said:
Keep up the good fight my dude
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I am doing the best I can - though, as I told the NP today - that gets harder and harder as more time passes with the inability to do ANYTHING.

Had HemOnc followup today. I'll be re-starting chemo soon, tho this will be a different one altogether. NP asked If I needed anything... "yeah to be able to train again".
 
Are you able to hike or cycle? Both good exercise and nature is good for the mind
 
webble said:
Are you able to hike or cycle? Both good exercise and nature is good for the mind
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Initially it was "don't do anything that could raise your bp" and that included shit like "get in an argument".

I did ask to get off the anti seizure since my ASSumption for why I was on it was on the off chance that the seizure was caused by brain mets, but that has been ruled out. That means it was either chemo or BP induced (or some combination thereof). I was also asked "is there anything else that you need" and I was point blank and said "yeah, to get back to bjj. sitting around without at least the ability to do that is probably worse for my mental health than literally anything else".
 
Do they have any road for you to be able to that? Or do something more at least?
 
webble said:
Do they have any road for you to be able to that? Or do something more at least?
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I think that my MRI a few weeks ago that confirmed no brain mets was one of the things they were waiting on. I am not 100% on that, as this time I saw an NP/PA and not the actual oncologist who would make the decision, but the oncologist absolutely knows and I was a little more than emphatic with the provider I saw that I needed to A) get off the anti seizure because it feels like its making me sleep like 20 hrs a day and B) needed to get back in the gym.

They should have had cancer panel where my providers (HemOnc, RadOnc, and Endocrinology) get together to discuss cases and I know they disagreed originally on what was going on.

I do happen to have access to a decent amount of medical providers - I happen to know a few doctors in various fields, an NP, and still talk to my RadOnc PA - and they've all pretty much said there really shouldn't be a reason that I shouldn't be able to just do it. But again, I only got 1 brain.
 
Aight, appt today with the oncologist rather than a PA or NP, so we had some shit to hash out. Did leave out that I had to have an Echo last week because new chemo comes with potential heart failure.

Now, I want to preface a few things here. First and foremost, I am absolutely a pain in the ass patient, and I own it. I'm not rude, etc, but I've been doing this a long time and I know myself and my body, so I'm pretty strong willed when it comes to certain facets. A former PA knew this about me and got me the referral to the current doctor I see, who is ALSO strong willed. Second, I know several doctors of varying specialties, who I will ask. Most of them are more GP styles, be it family or ER doctors. I do also have access to aforementioned PA. Three, at this point and overall, I'm pretty smart and intuitive about my course of care and things going on with it and how they are affecting me.

So, my two main goals going into this appt, specifically, were to get my dose of anti-seizure meds lowered and be released to the gym. The former because some days I am sleeping 16-20 hrs per day, only rolling out of bed to take an Adderall and do a World of Warcraft raid, since that's about all the doctor was letting me do. My appt a month prior, i asked the same thing of whoever I saw and she asked why I thought it was that. Well, Jan, that's been the only additional medication change I've had. I don't have brain mets, my bp is fine (though I am on a BP med), so that leaves the chemo, which I am no longer on; she can't take me off but she can lower the dose. That left the gym, and plainly put, she didn't want to release me. Lady - I've been doin this as long as you've been a doctor. You're insulting me about as much as I'd be insulting you if I questioned some basic shit about your job and my treatment. This means don't go with the fattyweights and be careful. I'm already left leg dominant (tumor was on the right), so no real strain there. I'm not looking to do an ADCC run, just trying to get some movement in and not lay there like a fat sack of lard.

So, I got the two main things that I wanted. I cannot be taken off the seizure med until a neuro does it, was my understanding, so that's waiting until August. I do have to be careful with seizures. I'll risk it all when it comes to a liggy... I got more MCLs, LCLs, PCLs, ACLs, Meniscii (with or without the scooter stick), etc... but only one brain. And giving myself the software version of a TBI doesn't sound ideal, either. So, if seizures happen, I might have to walk away. Getting closer to August, but if these meds don't get under control nothing will matter.
 
Ok well that all sounds like a step in the right direction and countdown to Aug isn't that long after all that has happened
 
Webble said:
Ok well that all sounds like a step in the right direction and countdown to Aug isn't that long after all that has happened
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That is one of those "it is and it isn't". The time is a killer, as is the unknown after that.
 
I got back into the gym for the first time after clearance.

I didn't wanna go. I'm so tired. I'm sore from sitting on my ass being a fat piece of shit.

But I went.

I didn't do much. Got a round of light stand up and a light round with a buddy (who happens to be an actual ER doc).

It'll be a slow progress, but I can at least get back to it.
 
This is technically 2 (to 2.5) in 1 because the last one didn't really have much to go with it and there are some that just really don't warrant much being said.

Last week I had an Oncology followup. Nothing to report, really; labs all look pretty solid. Main thing to come out of that was the PA going "you seem much happier since I saw you 2 months ago, what changed?". 4 weeks prior I was finally given the clearance to return to doing BJJ, so I've been able to get some rounds in. Granted, it's not a lot - 9 rds for a grand total of around 45 minutes, but I'm there.

Prior to that, I had a support services appt. That was meh. It was mostly to get established should I need them in the future.

I thought this would be the appt that might get me back towards working. Apparently that is not neuro's job, but neuropsych, at least in terms of checking cognitive decline, etc. The main thing that sucks about that is that I had gotten a referral to them previously and we declined the appt because it was supposed to be next week. But in terms of the rest, she said reflexes, etc seemed to be fine and there was nothing she saw that was concerning. Did manage to get my dose of antiseizure meds lowered further, as well; have to slowly taper off those.

Beyond that - waiting to see what my boss says in terms of work. If he's okay with what neuro said, then we have to figure something out because I can't drive for 2 more month plus getting these seizure meds under control is a pain; some days I do pretty good and others I'm sleepy half of it.

The main thing - I'm happy to be back on the mats a little bit. I feel clunky and awkward. My hip still feels weird where they put the rod in and I roll over it. But I'm moving and getting back into the groove.
 
Oh that's brilliant news, mental health is as important as and for physical health. I was just thinking about you yesterday and wondering how you were so fantastic to see these updates
 
Webble said:
Oh that's brilliant news, mental health is as important as and for physical health. I was just thinking about you yesterday and wondering how you were so fantastic to see these updates
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The mental health aspect has been the worst part (bjj aside, even), mainly because A) there was such a lead time and B) because so much is riding on some of these appts and overall, I just don't like the unknown.

And with frequency of some of these appts now, I'm trying to pare it down to the MAJOR updates with actual substance.
 
Bob002 said:
This is technically 2 (to 2.5) in 1 because the last one didn't really have much to go with it and there are some that just really don't warrant much being said.

Last week I had an Oncology followup. Nothing to report, really; labs all look pretty solid. Main thing to come out of that was the PA going "you seem much happier since I saw you 2 months ago, what changed?". 4 weeks prior I was finally given the clearance to return to doing BJJ, so I've been able to get some rounds in. Granted, it's not a lot - 9 rds for a grand total of around 45 minutes, but I'm there.

Prior to that, I had a support services appt. That was meh. It was mostly to get established should I need them in the future.

I thought this would be the appt that might get me back towards working. Apparently that is not neuro's job, but neuropsych, at least in terms of checking cognitive decline, etc. The main thing that sucks about that is that I had gotten a referral to them previously and we declined the appt because it was supposed to be next week. But in terms of the rest, she said reflexes, etc seemed to be fine and there was nothing she saw that was concerning. Did manage to get my dose of antiseizure meds lowered further, as well; have to slowly taper off those.

Beyond that - waiting to see what my boss says in terms of work. If he's okay with what neuro said, then we have to figure something out because I can't drive for 2 more month plus getting these seizure meds under control is a pain; some days I do pretty good and others I'm sleepy half of it.

The main thing - I'm happy to be back on the mats a little bit. I feel clunky and awkward. My hip still feels weird where they put the rod in and I roll over it. But I'm moving and getting back into the groove.
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Glad to hear that you were cleared to get back to BJJ!

You've got the right mindset. Keep your focus aimed at the time you are able to spend on the mat... as opposed to the regression from where you were in the past.

Past is the past, can't do anything about it. Plus, unlike many of us (well, me at least), you have a legitimate excuse for why you're having to ease back into it. :train:
 
osubuckeye4 said:
Glad to hear that you were cleared to get back to BJJ!

You've got the right mindset. Keep your focus aimed at the time you are able to spend on the mat... as opposed to the regression from where you were in the past.

Past is the past, can't do anything about it. Plus, unlike many of us (well, me at least), you have a legitimate excuse for why you're having to ease back into it. :train:
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I made promises to myself early on about complaining, etc. Not that I don't have bad days, but it helps.

Andddddddddddd today my wife sent me an email that she got where NeuroPsych can see me... In January 2027.

*sigh*
 
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