This Cancer is such a PITA......and legs

Hey guys..... As always, sorry for not posting more updates. Been crazy busy and a tad bit miserable so have not made it a priority. Also, had been waiting to see the docs and get more tests before give you all a proper update. Strap in bitches.... this aint a short one ;)

Lets recap.... We last left off after my liver embolization was postponed. My tumors did not grow so it came down to my decision as to wether my symptoms were bad enough to do the procedure or to keep pushing and scan again in a few months......we pushed. I had fresh MRI's of abdomen and pelvis a few weeks back and there was no visible growth on the scans. While this is AWESOME news, it does not really tell the whole story. I am still the glass half full kind of guy here, but scans are not everything with my disease so have to dig into this a little deeper. Here is a summary of my recent visit with the Interventional radiologist:

She said even though my scans show no progression, my worsening symptoms say otherwise 😞. She said even though the scan was the same, if the symptoms are getting worse, it likely means the cancer is progressing "in the background." Likely smaller/microscopic  tumors adding to my hormone release, hence making the symptoms worse. It's not definitive that it's getting worse, but she said symptoms are just as much of an indicator of progression as scans are. The scans will usually catch up to the symptoms (fun). 

She said I am likely going to need the procedures sooner rather than later. She would do it next week if I decided I wanted to, but she's also "ok" with waiting another 3 months and scanning again and seeing how I feel. 

So now we add a new worsening symptom to the mix......... Since I started treatment almost 2 years ago I had reported that my legs were hurting a bit. This started like achy joints kind of like when you are sick or have the flu. It was tolerable for over a year and I was even working out and running through it. More of just a mild annoyance. For the last 3 months or so this has progressed into full on bilateral leg fuckery. Not only do all my joints hurt in both legs from my hips to my toes but most of the muscles are cramped and permanently Charlie horsed. With all the injuries I have had to my neck, back, shoulders (i can go on lol), the legs have taken center stage if that tells you anything about how bad its gotten. They hurt from the minute I wake up until I force myself to sleep. They hurt when I'm sitting still, moving, being active etc. Nothing changes.... No meds make a dent and no amount of rest is having any effect either.

I saw my oncologist last week and he tested for everything. Full blood panels....... checking for arthritis, inflammation, some auto immune stuff.... on so on. I continue to be the pillar of perfection as my blood is perfect across the board (also kind of a scary thing for all you a holes..... no amount of blood tests shows my cancer really..... only some very obscure ones specific to my type of disease.... I hope this keeps you up at night lmao ). Next, they ordered an MRI of my legs to see if there is anything they could see. Just got the results and yet again I am just perfect ;). All clear...... not a single note.... So in my mind just leaves one thing that could be manufacturing/causing this pain...... Wanna take a guess?????? Yup.... probably the thing that is helping keep me alive and my tumors at bay..... The damn butt dart.... As if I didn't hate you enough as you are, you decide to add this bs to the mix.....

So where does this leave things?

I am supposed to be on the butt dart (octreotide/lanreotide) for the rest of my life..... Most people in my condition will be the same. Especially, since my tumors are "active" and secret hormones. The shot helps keep this in check...... well not fully but things would likely be way worse with my symptoms and growth if I was not on it. The embolization can have an amazing effect as well. It can actually shrink and push back the tumors for a while. Most cases for a year or more....... Even though this is the case my medical team has always said that even with embolization I would continue to be on the shot. Since this leg pain is now ruining my life the oncologist has suggested that IF I do the embolization he would then feel comfortable taking me off the shot for a bit just to see if my legs stop killing me...... Im not really worried about not being on the shot to be honest..... I feel like a decent amount of shit most of the time and live through it most days.... I dont feel like it would get much worse. There are 2 things that concern me more.... Firstly, that my legs don't start to feel better..... that would def piss me off and secondly, that I would have to get used the shots again. It took me about a year to be able to tolerate what that shit did to my insides.... I was quite a mess that first year until my body finally got used to it. I lived in the bathroom..... I couldn't eat a saltine without it hurting my guts..... The thought of having to go through that again makes me want to roll the dice without it. Also, I should make it clear that while having the embolization will improve my life for a while it will NOT have any effect on my leg pain......

While the choice of when to do this next step has been in my hands....... I'm feeling like there really isn't much of a choice here now. I cannot handle my legs feeling like this for much longer..... I let it go on for too long to begin with (totally on me....Dayna was not happy I didn't dig into this sooner). This procedure is gonna suck and make me miserable for a while as well so coming to grips with that is also hurting my brain. Of course, now I really wish I did it back in July before my legs got so f'n bad. Really need to think on this...... feeling a little stuck and frustrated at the moment......

Lets end positive....

Rant over..... As always, life could be way f'n worse. I could need chemo, I could have worse progression, etc. Im thankful for everything I have including the people around me..... Hockey season just started so super stoked for NYR Hockey (although they will prob kill me before the big C does). Ready for more concerts if my legs can take it.... Also, Really enjoying my new work life and family.

love you guys.......

PB