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Just a quick update. Finally have everything scheduled, and the calendar is ramping up again... Today — Lanreotide treatment began again 💉 Today — Bloodwork sent for leg pain testing 08/28 — Echocardiogram 09/09 — Gallium-68 Dotatate PET-CT 09/17 — Liver/Abdominal MRI 09/24 — Treatment 10/20 — Colonoscopy 10/20 — Liver/Abdominal CT Scan 10/22 — Treatment 10/23 — Oncology Follow-Up 10/30 — Interventional Radiologist Follow-Up. (Let’s hope we can cancel this one!🤞🏻) Will of

We met with both the Medical Oncologist and Interventional Radiologist today. The cancer within the liver indeed shows progression, as expected from recent results 😔. How much (or hopefully how little) is unknown until further imaging is completed. Paul’s surgeon said she’s admittedly “a little anxious” about his scans, but we need more information before panicking. So he's getting a ton more tests/scans over the next couple of weeks that will provide more clarity. Two poss

Well……today could have been better lol. Not the results I was hoping for but then again it’s me we are talking about. Other then catching guitar pics at a rock show like I’m Henrik fn Lundqvist my luck is pure shite lol. So over this to be honest. Super quick recap while we sort ourselves: • Multiple new liver masses (2 or 3 minimum it sounds like). • One of them is pretty large (about 2 inches x 1 inch). — This is quite a big growth in only a 3 month period, especially si

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.