Breaking the blog.....

This one keeps getting taken down for some reason so trying again ;)

Going to add to the recent FB post here and try to give a more detailed update including some actual "feelings" so bear with me.

The Good:

No new tumors found outside the liver. (actually amazing). I have not been feeling great the last few months and was expecting to see worse..... More than half of the tumors that were previously active are less active (a result of the embolization procedures). This likely won’t stay this way but let’s keep taking the win while we can.  The result of the embolizations usually last around a year.

The not-so-good:

A few of the tumors are indeed thriving a bit and increasing in size and activity.  One looks massive but could be deceiving on the scan. The Dotatate PET scan results basically confirm that the suspicious suckers are indeed growth. They lit up from the injection during the scan which shows that the tumor markers are there. The radiation basically binds to to the crap my tumors put out when active.

The “we don’t know how we feel about this” part:

The larger tumors that seem to be thriving are likely a candidate for another procedure called PRRT  (a targeted radioactive IV therapy). Something the Doctors have already mentioned but we’ve been hoping to avoid for a while. Did not expect to need so soon, but could potentially help slow down the larger tumors. This would be the next logical step in my treatment plan but is NOT without some worries (kidney and liver problems, blood cancers etc.). Have read a lot of good and bad about this procedure. It can certainly have very good and bad outcomes. It's also like a 6-8 month process.

Some other info to add:

I got back my 5HIAA test and my serotonin is much lower but still really high. I am back on the treatment which would lower this so makes sense. Im still having side effects like face flushing a lot so the hormones are still being A holes. I've only had one dose so far so hoping now that im back on the shots this and my stomach issue might improve a bit.

I had a paroneoplastic panel done to test a few things that could be causing my leg pain. Notthing came back "positive" but the test also says that this does not 100% rule out that my cancer is causing my body to attack itself...... Still on the hunt and determined to figure out what the f is causing my legs to hurt so bad. This pain is def unsustainable at this point and I def need some answers here. None of the meds did a damn thing so not sure where to go from here, but we are at the point of being dicks to my doctors and pushing for other testing to keep ruling things out.

So how am I (Paul) feeling?  

You asked......

Most of you know that I walk around daily acting/pretending like there is nothing wrong with me. I feel I do this pretty f'n well. I can't count the amount of times in a month that someone says "you look so good..... or you're sick???". Honestly, this is often infuriating, but I know you all mean nothing but love...... You see what I LET YOU SEE.... ;). There is no benefit to anyone for me to be open and honest all the time. Why make anyone else feel like shit or loose sleep at night (its not lost on me that I am doing that right now likely)?

So how am I feeling for realz?

• f'n exhuasted - mentally and physically. Constant war. Trying to keep living a "normal life" is draining my soul for sure.... I'm not giving up im just sharing....

• f'n hurting - my baseline level of pain for sure would keep most from getting out of bed each day. My legs, my liver, my ribs, my back, my guts, my vagina.... you name it.

•  menopausal - joking but not really... my face is on fire and body is frozen most of the time....

• Sick to my stomach like Im going to die from immodium poisoning well before the C gets me. really wouldn't survive life without it.

• Pissed the F off..... At life, at my doctors, at myself.... say some shit to me dont like and I will glady add you to the list ;)

• D....... F*$king......termined - this shit will not break me. Im still going to work, still going to that next concert, still faster and stronger than you, and still gonna drag this fucked up body around the best I can. (i will add that the iron maiden pit broke me.....my legs gave out...too many old smelly metal heads....i think that was my cyrptonite lol. lets hope this was isolated)

• NOT F'n Scared to die! - People assume this is the hardest part..... (this is where D bomb starts crying....who we kidding....she never stops). Im not scared... I have had such an amazing life that I am 100% ok with what I've gotten to this point. I truly mean this. I have LIVED....Have the best woman, met so many amazing people, traveled the world, raced bikes, seen my fav bands 10 times over, blah blah.... Just lived. Those of you that truly know me know that this is the truth. However, I AM scared to be perpetually sick and a pin cushion for the rest of my life. I will NOT be a guinea pig. There will come a time where I decide f*%k science and choose what I want over what they "think" I need. Im not there yet so simmer down.

Rant over...... Love and appreciate you all.... If somehow any of this has offeneded you please reach out to Dayna for a private cry sesh LOL. Kidding....please dont do that. PS: just a quick shout out to some people close to me that are going through their own hells.... struggles, treatment, recently diagnosed. You matter, your shit matters, and I have your backs...... Love you guys. (A, S, J, B)