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Hey everyone, figured it was time for an update. Still dealing with the annoying and horrible pain in my legs. This is starting to really get on my nerves and affect my daily life. Since seeing the pain management doctor, I'm on a second type of medication now to try and calm the pain down. Actually have to up the dose today to see if it can make a difference. So far, none of the meds have made any dent in the leg pain, and I've seen only negatives: lots of fatigue, lots of b

Hey everyone, last I left you, we were still talking about my Chiari malformation/tethered cord being the latest theory about what was causing my legs to hurt. After seeing the neurologist and the neurosurgeon again, they have said unequivocally my spine is not the problem. Thankfully, no surgery, even though my brain and my spine are both pretty jacked up, they're 100% not the reason my legs continue to hurt, so we continue on. I've seen a pain management doctor since and I'

Paul left out two of the best parts of the urine jug story. Have to share to bring some additional humor to this shit show. (Or piss show.) For context if you didn’t read Paul’s last blog post… he has to collect his urine in a jug at home over a 24 hour period for testing. He does his first collection in our upstairs bathroom. He did not realize the jug had a slow leak in it. Puts it on the bathroom counter before bringing it downstairs, still unaware of the leak. I wake up,

Just wanted to give a way overdue update to you all. Definitely been a couple of frustrating months since the liver embolizations. Although those procedures were pretty successful, the constant pain and issues with my legs have not gone away. This has been going on for almost a year now and I've seen every possible doctor you can think of: - rheumatologist - vascular - neurologist - neurosurgeon - orthopedic surgeon - etc. For a brief while they thought the issues were stemmi

The good: Surgeon is very happy with the overall results of the torture procedures (25%+ shrinkage of a decent amount of the tumors) and feels optimistic/hopeful the liver tumors will behave or grow only minimally over the next year, so Paul should hopefully have about a year of liver stability. She did mention the reality/likelihood of needing to repeat the procedures in the future, and I’m pretty sure I saw him laser beam a hole in her brain with his eyeballs 👀⚡️💀. New qu

Hey all..... PB here. Figured it was time for another update since I haven't surfaced after the 2nd Liver embo. Well, it sucked ;). It was just as painful as the first round but thankfully the pain did not last nearly as long. The fatigue and flu like feeling is still hanging around but im managing life around it where I can. My legs are still killing me all the time but that is another issue I am still working through with my care team. I have scans in 2 weeks j

Hey everyone. Paul had his second liver embolization procedure yesterday. Things are definitely similar to the last procedure. — Very rough time with the pain and pretty miserable overall. (He was put on a 15-minute interval Fentanyl pump all night/morning this time around 😳.) But thankfully, everything went as expected. He is stable/safe and being discharged soon to continue recovery at home. He has a rough few days/week(s) ahead of him, but definitely in the home stretch

PB here..... Wanted to give everyone an update from me (you will tell its not Dayna based on all the grammatical and spelling errors). The last 3 weeks have been A LOT. Dayna has been keeping you all posted so not gonna get too deep in the woods on just how f'n awful this was. Those of you that know me well know how much pain and suffering I have been through in my life between accidents, kidney stones, etc. This might have been at the top in terms of SUCK. I have to g

What a slow and rollercoaster-y recovery of ups and downs. Very minimal ‘ups,’ if you can even call them that. I’ve never seen him have to try so hard to put on his poker face. This one is definitely taking a physical and emotional toll on him. He said he has literally never felt this physically and mentally awful in his life. (For those of you who know what he's been through in the past, that is saying a lot .) He expressed that unless this round of procedures proves to pro

Best birthday present ever! — Just received Paul's biopsy results, and the grade of his tumors has not changed since last year! (With this cancer, the tumors can jump grades to a more aggressive state at any time.) So while yes, he's still riddled with cancer, it at least continues to be a slower-growing kind. It's the best news we can get other than the cancer magically disappearing (or a cure appearing). Paul's result is 3% on the Ki-67 Proliferation Index. (This basically

Paul slept through the night last night for the first time all week, and has tapered off the opioids in the last 36 hours. Taking only Advil/Tylenol at the moment. Still no fun, but seems to have definitely turned a corner! 🙌🏻 🩷

Hi, everyone. So sorry for the delayed update — it's been a challenging week. Paul's definitely suffering quite a bit. Managing, but suffering 🥺. Some of you may have seen a VERY RARE and honest emotional dump from Paul the other night. I was shocked to see it myself, so that only goes to show what a toll this procedure (and his cancer as a whole) has been taking on him. We can’t say we weren’t warned that this would be a rough recovery. His surgeon did tell us the pain wo

Cautiously busting out of this place!

Quick update. He's still pretty effin' miserable, but better than yesterday. Surgeon said everything went as expected, procedure-wise. Pain has gone from a 9 to a 4 (4 on lots of pain meds). He's been kinda-ish-semi-comfortably sleeping in and out the last couple of hours. As soon as he can tolerate the pain on oral medication, keep a solid meal down (and poop 💩😂), they will let him go home to finish recovery — maybe even tonight or tomorrow. Will update if anything change

Tuesday's scan showed some increase in size of his existing tumors as well as multiple new (small-ish, under 1 cm.) tumors, compared to his last scan from only six weeks ago. 😔. But localized to the liver and thankfully no visible tumors elsewhere. Today's procedure went as planned. Unfortunately we won't know until his next scan in four weeks if the procedure worked (fingers and toes crossed, and accepting all the positive vibes). He's thankfully sleeping now. The post-op

Cliffs Notes: • Symptomatic AF • Stopping medical treatment indefinitely, due to side effects. • Liver Embolization #1 scheduled for Dec 11. • Live Embolization #2, January 7. SYMPTOMATIC: Paul's definitely struggling quite a bit recently with his symptoms. I think it's likely a combo of still being relatively fresh out of gallbladder removal / pancreatitis, this relentless leg pain and likely just the cancer itself of course is taking it's toll. He's currently couch-locked w

Paul is being cautiously released today! Too tired for more detail at the moment. That is all. (Lucky for you 😉 )

Cautiously optimistic!🤞🏻 Labs are trending in the right direction. They are all still VERY elevated, but less elevated than yesterday. ❤️. He’s not in too much pain, and hasn't needed any pain meds since last night 😅. Doc said he can carefully move onto some black decaf tea and soup broth (yum), and wait and see how he responds. If he responds ok, he can move onto some light solid food. Progress. He's still nauseous, overall feels like total crap, very fatigued, sore, etc.

Ok finally spoke with his original surgeon... It’s a waiting game. Likely for a few days. Preliminary MRI results showed no stones, but he is still waiting on final results. He suspects there was a rogue stone that may have already passed into his intestines before the MRI. (Basically on its way through, got caught in the pancreas and caused the pancreatitis, then moved into the intestines.) They do not want to do the endoscopic procedure and go “searching” around for it unle

He was doing great at home Wed/Thurs, but was in awful pain again yesterday and vomiting so we came back to ER around 4am. Now he at a minimum has pancreatitis, and will very likely need another procedure 😭. Liver and pancreatic enzymes are through the roof. Other labs abnormal as well. They have strong suspicion that a gallstone got loose during surgery and traveled into his biliary tree and is causing a blockage, but need MRI results to confirm. There IS a chance this is

Out of surgery! Went well! Surgeon said it was much worse than the scans showed. His gallbladder was “gangrenous” (dead) AND it was perforated . He said it was no wonder he was in so much pain. Waiting to go see him in a few.

Quickly as possible, as it’s been a LONG 24 hours…. Paul is currently in surgery getting his gallbladder removed. He was in agony all night and it turns out, exactly as we knew would happen, his cancer treatment gave him gallstones. (This is an INFURIATING topic for another day/post.) He had a horrific night. But he was in very good spirits going in, and they finally had his pain under control. He was definitely in better shape than before 🩷. Surgeon sounded very confident t

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. ...

Hey everyone! We’re postponing the liver embolizations (for now). Paul’s most recent scan this week thankfully showed no new growth and...

Hey everyone! Sorry I have not been great at keeping things updated here. Have had so much going on in work and cancer life. Things...

quick download ..... Surgeon was great — really like her a lot. But brutally honest about the severity/recovery of this. She said “my...

Appointment scheduled with interventional radiologist for February 21st. It's just a consultation to discuss the liver embolization...

Paul’s recent scan of his liver showed some growth since his last scan in August 😥. Nothing too significant, but enough that his...

I know its been a while.... Figured its a new year so an update was overdue.... The good..... Have been feeling pretty good the last...

Apologies that it has been a while since I posted here. Wanted to wait until after I saw the oncologist which happened just...

So i know its been a while..... I have been living my life and doin the best I can.... This is a good thing. I just got back from...

Saw oncologist yesterday. She said let’s stay the course for now and just keep treating medically and keep eye on things. Doesn’t suggest...

Some very positive news 🙌 Liver tumors have not grown since last scans. We still need to deal with these bitches but at least this buys...

Tomorrow will be 1 month post op so I thought I would give everyone a quickie..... Had virtual with the surgeon yesterday and he is very...

Hey guys. Sorry it's been a little while since last update. Here to report positively. Been doing much better each day and have...

Hi! I’ll let Paul post his own update soon, but I just wanted to let you all know that he is doing better than he was this time last...

I cannot believe it's been a week!!! So many ups and downs in the last few days. Thought I was ready to go back to work Tuesday and...

Yes. When asked by the recovery nurses if I had any visitors coming my response was Scarlett Johanssen. Maybe she forgot. Apparently...

He's eating. pooping and walking on his own 😂😅. Follow up soon! Xoxo

Last few hours have been an improvement! Still certainly in pain... but nausea has lifted, pain more tolerable, did a few laps around the...

Sorry for delay — it was quite a long night. Most importantly… Paul is stable. All vitals are great. Surgery went exactly as...

Surgery went as expected. No surpises and no extras. Paul is in recovery --- in lots of pain, but being managed. Will post more details...

Paulie Positivity joking his way into surgery… He’s a freaking trooper. Definitely anxious and stressed as to be expected, but also being...

Sorry it's been a while since I posted. Been trying to enjoy some life and forget about all this BS for a while.... Surgery is this...

Trying to detach my feelings from the fact that this surgery is being performed on my husband — this is pretty effing cool… The surgeon...

Anyone else concerned about Paul’s sudden use of the word “y’all” in his posts? We’ve been together for 23 years and I have never heard...

Sorry its been a while..... been waiting to have enough to share with ya'll. First.... treatment side effects seem to have lessened...

I have always LOVED this statement. Any of my moto family who has taken or know the guys at YCRS (Yamaha Champions Riding School) know...

Some of our friends and family have asked these questions. I figured I would share here for those of you who may want to know, but don’t...

We met with a bunch more docs this week. We could really use a crystal ball right about now. NET LIVER SURGEONS #3 + #4 Both are NET...