January 2024

After my last Dr visit, I was asked to schedule a scan in December and follow up with Dr. Wani unless one of three things happened: 1) unexpectedly start losing weight 2) get Jaundice or 3) feel pain in the area of the pancreas.  In late November, I made an appointment for a scan on Wednesday December 20th although I didnt make that appointment.  On Sunday December 3rd, I felt the ping in my abdomen and mentioned it to Jen who suggested I go to the ER.  I mentioned i'd like to see if it was a one off or if it was going to continue and agreed, if it was still an issue on Monday, I'd go to the ER.  I ended up going to UC Health's ER on Monday at 3pm....

After 7+ hours at the ER, having done scans and bloodwork, they said it could be chronic pancreatitis as they didnt see anything problematic and even mentioned the size of the lesion was smaller than on prior scans. The ER Dr's asked that I follow up with Dr Wani and to take Tylenol for the pain. 

I sent notice to Wani's office through the Epic portal and, when I heard back, they asked me to schedule an MRI with MRCP (pancreas focused) asap but, with the end of year holidays and a packed schedule (for insurance reasons), I wasnt able to get the appointment until Saturday January 6th.

This MRI is a long one and they put this "board" on your chest to focus on the pancreas. In the moment, when they ask you to hold your breath, you can feel the heat of the scan....

I was scheduled to see Wani on Wednesday the 10th and when I woke up that Monday, I had a small headache and felt like my vision was blurry.  The headache continued and during my Wednesday appoint, I mentioned it to the nurse who took my vitals before seeing the Dr. When Wani came in, he asked about the ER visit and how i'm feeling then mentioned they've seen growth of a "stone" in my pancreas.  Apparently they've seen it before and it may have been noted in the scan results as he said it's getting bigger and will block the pancreatic duct if not addressed. A blockage creates Jaundice and the initial action is to schedule an ERCP and put in a stent.  After that, they'll need to break up the stone and that could take 3-4 more ERCP procedures. Although these aren't long procedures (under 60 minutes)  going under that much is troubling and I asked if there were non-evasive ways to break up the stone.  Wani said there are some laser procedures and we'd discuss later.

Near the end of the appointment, I told Wani about the vision/headaches and he said I should see my Primary Dr asap. As I was sitting in the UC Health building, I asked if there was anyone there I could see and they again said to connect with my PCP.  I took the first appointment available with my PCP, on Monday the 15th.

When I woke up on Friday the 12th,  my vision had changed again and I was seeing double. This is the first time i've experienced it and it's a different view in each eye....  not coming together into one picture. I kind of dealt with it for a few hours before making the decision to go back to the ER.

Jen drove us back to UC and we checked into the ER on Friday at 10:30am. When we left, Saturday at 5:45pm, they'd done 3 CT scans, 3 MRI's (brain and eyes) and 2 horrible spinal taps (now known as lumbar punctures) along with multiple eye tests and blood draws. While they couldnt say what happened, they were able to rule out more serious issues like a stroke or aneurysm. They sent us home and said I'd hear from Neurology and ophthalmology for follow up within a day or two.

On Tuesday, we went back to UC but this time to the Eye center to meet with Dr. Pelak, a neuro-ophthalmologist who said it looks like I had microvascular Palsy, which is similar to a stoke in the nerve supporting my left eye.  She explained it's similar to a "frayed" nerve which is usually associated with patients who have high blood pressure, high cholesterol or Diabetes.  She also mentioned the possibility of an autoimmune issue which sounded more likely and possibly connected with the pancreas as I dont have the other health issues. The best news, which I asked her if I heard it correctly, was the nerve usually regenerates or fixes itself in 12-14 week. 

It was a LONG appointment as they checked my eyes multiple times using prisms, lights and fingers I had to follow.  It's clear my left eye is not tracking as I could see all of them (there were 5 people in the room) watching it as they moved their fingers back and forth, up and down. Pelak said there is a great UC Dr who can get me a prescription for glasses, with Prisms, that should help until the nerve gets better although it wont be like my regular vision.

I met with the Optometrist on Thursday and it was hard to dial in good vision. In my left eye, the script has a significant vertical and horizontal prism to try and center my vision with the same focal point as my right eye. Dr said I cant "gaze" by moving my eyes left or right and need to rotate my head to a focal point.

She suggested an eye glass shop and a specific person who is good with prism, we went last weekend and picked up the glasses on Wednesday.  They're really rough unless I hit that exact point and I keep trying them although it's been better to have the eye patch and just use my right eye.  The problem is how tired that eye gets and usually, in the late afternoon, it starts tearing up. With either eye covered, I can see pretty well and surprisingly, the left eye has better vision. If I cover my right eye, it causes some balance issues so most of the time, i'm covering the left eye.

The glasses are for distance and dont help with the computer. I'm wearing my prescription computer glasses (with eye patch) when using the computer and readers (with eye patch) when reading or on the phone, etc.   I could write so much more on how they eyes feel or how much energy it takes to pull the left eye in to try and center my vision. I'm not playing hockey or driving right now and optimistic this will get better some things will bet back to normal.

And.... in the middle of all of this, I'm scheduled for the 1st ERCP on February 22nd.

More to follow....

  

August Update

 Good Morning,

A few things to update and then more waiting....

I spoke with Dr. Wani's office last week and they gave me a schedule to reduce the steriod usage. I was on 40mg a day and each Friday, I'll go down by 5mg until they're gone. Already a week in and tomorrow will be at 30mg a day. I'm glad we're backing off as the food thing seems to be the only continuing issue and by food thing, I mean the constant need for food. I've told a few of you this pull to eat is what i'd imaging having an addiction is like and, while I believe i've got great willpower, I just cant fight this. When i'm awake, i'm thinking about food and that's pretty unusual for me. 

My next Dr's Appointment is Friday August 11th to get the stent in my bile duct out. As I mentioned before, this is Not a replacement so that's great news.

On September 6th, I have an appointment with Dr. Wani to talk about AIP. Besides our one online call last year and seeing him at the EUS appointments, i've not had an office visit and not sure what to expect. I'm still doing research on AIP and imagine we'll have lots of questions.

On September 22nd, I have a nutrition appointment and i'm looking forward to this one. Since my search history is now filled with "anti-inflammatory" and similar searches, i'm getting overwhelmed with suggestions and it's hard to know whats best and it will be good to talk with a Dr. about it. Of course, I understand the obvious stuff and will avoid in my diet while not going extreme. Seems like moderation or elimination of some bad foods will help.

That's it... not much happening here over the next few weeks and i'll follow up after my office visit with Dr. Wani.

Thanks again for the continued good thoughts and appreciate you.

Sam

  

Appointment Day with Good News!

Over the past week, while waiting for todays appointments, we were contacted 3 times regarding my "scheduled" August 4th Whipple..... as shown in my UCHealth Portal:

My health care provider approved the procedure, I was approved for Short term disability and asked to schedule a pre procedure anesthesiology meeting. We wondered if they knew something we didn't or just preparing for the worst.

When I got to the hospital today, they provided me an itinerary of the days events:

I started with the CT scan... pretty standard stuff although the nurse who put the needle in my arm asked to see the itinerary and, when she saw I had labs later, taped it up so they could use it again without the extra poke. Good thinking on her part. Scan went well and I headed up to meet with Cheryl, the NP and my Advocate.

I've emailed with Cheryl a bit over the past few weeks talking about the other Dr's, their opinions as well as asking questions about hockey, meds and travel.  I think she's been a straight shooter and when she came in, I asked about the scheduled whipple and told her I dont see any way i'm getting on that table next week. She was cool and understanding while telling me they're looking at the scans which  will tell the story.....  We reviewed meds, weight (up 10 lbs in the past 4 weeks...), medical history, etc with the understanding the multidisciplinary board would again review my case and make a recommendation. While she felt surgery was off the table (she has a cancer patient she wants to put in my slot), she again said they are waiting on radiology and would know more at the afternoon meeting.

They walked me over for labs and I was surprised at how many stickers printed out.....  she dropped these tubes on the table like pick up sticks and I had to snap a quick pic:

They pulled blood and sent me on my way saying to be back by 12:45 to check in for the 1pm. While not really enough time to go home and come back, I grabbed some lunch, read some emails and wondered what the hell they were going to say.

After checking in, they took me right back to a room and said the conference was still going on. Jen had a busy morning, was on her way for the big meeting when I texted her the room number and moments later, Dr. Del Chiaro came in with his classic....Hello Mr. Williams... and went right into it saying the steroids worked better then expected and there would be no reason to perform a whipple.  Jen walked in and he repeated it saying the steroids reduced swelling all over and they're now wondering if the "lesion" is scar tissue from the first pancreatitis episode. While they've seen these spots on the pancreas, he said they seem to be moving around and not always in the same place..... bottom line is (and he qualified it again saying without a thorough biopsy and removal of pancreas) there is no way to say it's not cancer but they are finally saying the diagnosis is Autoimmune Pancreatitis. He also said, if teaching about AIP, he would not use my scans as they are unusual and dont look like a typical patients scans. It's a consistent theme we've heard from every dr on this journey.

Del Chiaro said he is a surgeon who will perform surgery to help people get healthy and often save their lives and, at this point, we will be moving back to the care of Dr. Wani, the pancreas specialist. This was great news as we've felt there was a bit of a miss that we kept talking with the surgery guy and not the pancreas Dr. While it was Dr. Ed who suggested we "try" the steroids, why didnt we see him (or Wani) months before while we were talking with Dr. DC?

I've been a little challenged with Del Chairo's attitude.....  he's a little cavalier and maybe that's exactly what you need from the guys that's gonna make the cuts but it's a bit off putting when he says it's good to get additional opinions but then says, if the dr's call him, he will talk to them (without saying he will not make that call). One of his good friends is the head of Cedar's Surgical Oncology department, but he would not reach out to this friend to engage or make a connection with Dr. Nissen.  I dont know... seems like collaboration isn't a bad thing when considering cutting out someones pancreas.  But....  as I say that, I really like the guy and believe he's struggled making a decision because he understands how crappy the surgery could have been especially if he had to come back to us and say there was no cancer.  So, he then surprised me....  by acknowledging what a good job we've done. He thanked us for not getting hysterical at the news (good and bad) and for getting additional opinions which, he acknowledged, made a difference. I told him I have his cell number and will call to check in....

So, what's next?  We expect to hear from and see Dr. Wani in the near future with a call at some point this week. Big questions including do I continue taking the steroid and if so, what dosage and for how long? While I understand it's pumping me up right now, not sure how much longer I can take the constant need for food and round the clock appetite. Hungry.... all the time...  Other topics for Wani include use of PPI (prevacid, prilosec, etc) and how long I can take one, Meeting with a nutritionist to understand more about diet including what to eat and what NOT to eat as well as basic management of  AIP. I'm reading what I find on the internet but can any of you really tell me what I should do first thing in the morning?  Is it a big cup of water or fresh made organic celery juice or a protein shake? Yea, it's really confusing.   

I received a bunch of emails from UCHealth saying test results and Dr's notes from todays appointments were available. While I dont know what all of it means, there was an update on my August 11th ERCP appointment which read, "he is scheduled for stent removal on 8/11 and aware to keep this appointment."  Great news as they'll pull the stent and not put a new one in!

Sometimes I think I find the perfect word(s) and other times I know I miss the target but the sense of relief we've felt and talked about today is on point.  The whipple was cancelled at 11am on Sunday and I had a 6am check in the next morning for an 8am procedure.....  We were that close to a (possibly) unnecessary major surgery.  To all of those who suggested questioning things, getting 2nd opinions and helped us find Dr's, thank you. I understand we have to be our own best advocate and sometimes thats rough so I appreciate your constant nagging. 

The thoughts from family, friends and strangers make a difference and we're grateful for the support.  Lots more to follow as we learn about living with AIP.

And finally, while googling things about AIP, this shirt came up and is sort of funny....

Thank you for reading this, checking in and thinking of us. We appreciate it.

Sam

Feeling good….

Since I know you don’t want to ask….. I’m feeling great right now. The steroid is helping as I’ve been pain free for over a week and have skated a couple times. I emailed my health advocate earlier this week to make sure it was okay to play hockey and she gave me the thumbs up. I was scheduled to play in a men’s league tourney July 21-23 and gave my spot up a while back. Turns out one of the guys now can’t make it so I’m back on the roster!

As advertised, the steroid have me hungry all the time and I’m sure any weight I dropped last month is back.  The good thing is I have an appetite.  I’ve asked my advocate if we can schedule time with a nutritionist especially if we’re talking about AIP as there are some trigger food to be avoided. While I already eat a restrictive diet (no beef, pork, shellfish, alcohol….) it doesn’t mean I eat great and I guess there is a need for more protein, less inflammation causing foods and I don’t know what those are. Since I got sick last year, the suggested no more fired foods and I’ve done a good job passing on them although I still like some sweets. Anyway, look to understanding from a dr. The right way to eat as I find the internet suggestions overwhelming and hard to find a place to start.

Still waiting on Blood work details from LA visit and then nothing happening until July 25th appointments. 

Thanks for checking in and more to follow soon. 

Sam

Dr Banks and ERCP

Dr Banks called late Monday and he (and team) believe, it's either a severe case of Chronic Pancreatitis or AIP. He was trending towards AIP and wanted to know how the steroids were doing. He suggested 2 additional tests (including A1C blood test) and asked me to follow up with him after the July 25th appointments to understand what my Dr's are suggesting. He also mentioned, if I want him to continue reviewing my case, I'd need to plan an in person hospital visit.

Also received call yesterday from UCHealth and they scheduled an ERCP for Friday August 11th. This will replace the current stent although, according to what Nissen said, there is a chance it could fall out on it's own.  All of it still revolves around the success of these steroids and possibility we might get an actual diagnosis. It still feels like we're trending further and further from a big surgical procedure.

I'm scheduled to leave for a work trip on August 18th and planning to go....   

LA Dr visits.

I bumped to LA on Wednesday evening and got back to the house late this afternoon.  Recap below...

Wednesday evening I met with Dr. Glenn Marshak, a family friend who wanted to hear the story from me and had also lined up meetings with the other Dr's. Based on the conversations and past discussions (he's known about and followed for a bit) he felt the Autoimmune Pancreatitis (AIP) could be the problem and he was glad I'm on the Steroids. He was not comfortable with the Whipple discussions and felt the CO Dr's we're possibly guessing and that the whipple was too severe (remember they cancelled the whipple 20 hours before the scheduled hospital check in time and 36 hours into the pre procedure prep).  While I was with Dr. Marshak, he called another Dr to discuss and make sure i'd get seen the next day.

On Thursday, I had a 230pm Appointment scheduled with Dr. David Berz, a hematologist/oncologist, and it was moved to 11am.  When checking into Dr Berz's office, there was a small area directly behind the receptionist with 6 chemo treatment chairs with patient(s) in each chair.  As a former chemo patient, it made me incredibly uncomfortable because of the lack of space and privacy. While sitting there hearing the conversation (nurses and patients), not only could I reflect back to the feeling of treatment, I could taste it. Near the end of each treatment, they would give me Lasik, some type of diuretic used to make you go to the bathroom and flush the chemicals out. It (and whatever else they did) have a specific taste and smell which came back as I sat there.... feet from the patients getting treatment. As Dr Berz was fitting me in, I ended up waiting over an hour in the lobby before they took me upstairs to a room where I waited an additional hour.  On a side note, they are expanding and the new space was great and much better suited to give space and privacy.

Before leaving Denver, I'd given Dr Berz's office electronic access to my medical records and I also brought hard copies and scans on disk so he was aware prior to our discussion of what's happened so far as well as why I was looking for additional opinions. He asked me to recap the past year and had a few additional questions that had not been asked before... mostly about blood work and tests.  As Dr Berz agreed we're not seeing cancer now and that the Steroids/AIP seem to be the most reasonable source of the issue. As he is a hematologist, we talked more about the blood and he mentioned some genetic blood work he helped pioneer 7-8 years ago that has become pretty common and questioned if CO dr's were looking at it. As it wasn't familiar to me, he asked if they could take some blood and we would have results back in about 10 days.  Dr Berz was great and, his take was, if the steroids do not solve the pancreas issue, there is a possibility of surgery (whipple or more) but we wont know anything until we see the post steroid scans on July 25th.  Dr Berz then mentioned I have a 3pm with Dr. Nick Nissen and they got me his address....

I ubered over to Dr. Nissen office on Beverly Blvd and was initially told he was unavailable. Not long after, I realized all 3 of these Dr's were on a group chat discussing my case and soon after Dr. Nissen was available and met with me. His card reads "Director, Hepatobiliary & pancreatic Surgery" & Surgical Director, Liver Transplant Program" at Cedars Sinai. While i've not kept track, maybe we have 40+ Dr appointments in the past year and Dr Nissen was just different. I instantly felt like I was in the right place and this guy knew.  So we recapped everything again (you'd be shocked to hear me talk about the pancreas including test results, scans and possible diagnoses) and he asked my concerns.   Dr Nissen was also glad i'm on steroids and he feels this could clear everything up... and i'm sure you're wondering how....   According to all the Dr's, the scans on 7/25 are the most telling signs if we're dealing with AIP and if the steroids are working.  Nissen said #1 goal is to identify if there is cancer and since right now there is none, he said #2 with AIP you treat the symptoms (acid reflux, pain, jaundice, etc) as there is really nothing else you can do.  With the next scans, he wants to see if the bile duct structure is better (less blockage because pancreas/lesion is shrinking) and said there are times the stent could fall out on it's own as the duct goes back to its normal size. He felt this is a classic case of AIP as the pancreas is "sausage" shaped on the scans and he's not clear there is a lesion. While this is confusing as the other dr's have confirmed a growth and they've biopsied it as recently as 6/12, Nissen was comfortable saying he believes the July scans will show bile duct heading back to normal and no issue with the Portal Vein.....  My big question was, if it is AIP and the steroids are a success, will I still need to consider surgery to save the protal vein.  He said it's a non issue and not something I should have surgery on for a couple reasons. First, he's not convinced of the lesion and second, he did an amazing job talking about how the body handles this and said, in this situation if the vein was blocked, the blood would find another path (he also said he could transplant a shoulder vein if necessary but it's not usually needed).  There was a 4th Dr I was trying to see but was unable to get the appointment. Dr. Simon Lo at Cedars was unavailable and then Dr Nissen asked if he could present my case at the next Tumor board on Thursday July 13th..... so Dr Lo could weigh in.  

Near the end of the time with Dr. Nissen, he asked for my UC Dr's contact info as he wanted to follow up with them as well as send in a request for access to my next Scans. It just felt like he got it and was going to be ready and waiting to see the results. I felt like I was in good hands for sure.... again remembering I was 20 hours from the Whipple.  Nissen was performing a Whipple on Friday morning.

That leaves us waiting for blood work follow up from Dr Berz office (around the 17th) and the July 25th appointments to see if the steroids have made a difference.  

I started the Steroids on Wednesday June 28th and it took a few days for me to notice anything. I'm hungry all the time right now and feel better but not 100%. In speaking with Nissen, I said I still feel like crap and he suggested I take a PPI (Prevacid or Prilosic) to help and was a little surprised it had not been a suggestion before. I'll pick that up this weekend and get started.

I've been reading about AIP and it's easy enough to google if you're interested. First identified in 1995, it's pretty rare with about 10 people out of a million getting it and a little more prevalent in Japan.  There are two types and i'm a little young for type one but possibly a little old for type 2.....  The pancreas is fighting healthy cells thinking something is wrong with them.  Again, no real solution, treat the symptoms and make sure there is no cancer.  The Medical pages I read seemed to indicate little or no connection between AIP and Pancreatic cancer with less than 5% of AIP patients ending up with pancreatic cancer. I like those percentages.

Lastly, i'm registered with Mass General and expecting to hear back from Dr. Banks (Harvard) this week. He received my scans late last week and was having his group review. One more review and expected confirmation.

Thanks for getting this far and checking in. Also apologize for my snarky comments on the last post.... I felt terrible and probably should have picked a better time to share how I was feeling.

I'll post up when I hear from Banks or get some results back.

Sam 

July 4th, Cali trip and 6 scheduled appointments

Morning and Happy 4th of July! Had 3 amazing days of Dead and Company shows in Boulder with family and friends. Last night ended with Dave Matthews joining the band for the final 4 songs and drones lighting up the sky as a giant Steal Your Face....

Quite a few things have happened since I last posted. I started on the steroid on Wednesday June 28th. While I didnt notice any immediate changes, Jen mentioned I had more energy on Friday and I needed it heading into the long weekend. Also started the antibiotic although that's on a different schedule.

On Wednesday, I also spoke with a friend from work who asked if i'd be interested in talking with Dr. John Kim (in Los Angeles) as they had mentioned my situation and he offered to catch up with me. He ended up calling Wednesday night and we spoke for about 45 minutes. As I had a minute to give a brief Medical history, he brought up a few things that haven't been mentioned by my dr's (question of  lymphoma, maybe the benefit of a "spyglass" if I need another ERCP/EUS and the possibility this is somehow connected to prior testicular cancer). Great guy willing to take a few minutes to talk with a friend of a friend....

While I was talking to Dr. Kim, Hockey buddy (Mike) texted to see how I was doing. He is a Harvard trained MD and ended up calling to hear exactly whats going on. As we're talking, he starts typing out email to Dr. Peter Banks, the Director of Center for Pancreatic Disease and a professor at Harvard.  He asks Dr Banks if he has some time to talk with me and review my case. Dr Banks responds quickly saying he is going out of town and for me to call him Thursday. I give Dr. Banks the high level overview and he says he will connect when he is back in town after the holiday. He calls back late Thursday asking me to send copies of scans/Med records related to the pancreas and have them at his house when he returns. He provides him home address and then says "i've seen this before...." and is the first dr we've talked with who's said that. To this point, everyone else has been stumped saying they dont know exactly what's going on. As you can imagine, some excitement hearing that as well as him saying it was good Dr. Ed got me on the steroids.

And finally, late last year, through a family friend, I was introduced to Dr. Nicolas Nissen from Cedars Sinai. He reviewed my scans and provided some feedback on the lesion. The same family friend suggested I visit with Nissen and Dr Davis Berz asap for a "2nd" (or maybe 3rd or 4th) opinion. As you know we've already postponed the initial Whipple, the time is right and i'm headed to LA Wednesday night for some appointments on Thursday and Friday. I went to UC health last week and got copies of scans/records and have them ready to share with Dr's in LA. While I dont know if they're thoughts will be consistent with the UC Health med team, something needs to happen soon as UC health called yesterday...

Received a call from Cheryl Meguid. She is part of the pancreatic team and the multidisciplinary board and I think my healthcare advocate. Last December, just before Christmas, we met Cheryl at the appointment where I was asked to make the decision if I wanted to schedule the Whipple right after New Years and we've not seen her since. So, she calls and follows up on what Dr's had discussed... a month of steroids before another set of scans and Cheryl offers to make the scan appointment on the 25th. She also mentions there will be a multidisciplinary meeting that day and we will schedule time to talk. A bit later I see a couple emails mentioning appointments and check the portal to see whats up:

July 25:

825am - CT Scans

930am - Multidisciplinary appointment with Cheryl

10am - Lab work

1pm - Multidisciplinary appointment (I believe this is when the board meets and wonder if she wants us to attend the actual conversation. At one point Del Chairo said I had the Most discussed Pancreas at UC Health and the possibility of us meeting with the board....)

3pm - Pre-Procedure services....  (I had a Pre procedure meeting a few weeks ago with anesthesiology and wonder what this is about)

So yea, that sounds like a fun day. Before we got off the phone, I mentioned we're speaking with other dr's including the So Cal visit this week. When I spoke with Nissen earlier in the year, neither of the Dr's wanted to talk with each other and both said "have him call me to discuss."  Cheryl supported getting additional opinions and agreed she is the right person to have the outside Dr's contact to discuss my case. Extremely helpful as she can manage and schedule the conversation if there is a need for them to talk.

Lots happening and optimistic these Dr's will agree on the path forward and best options.... whatever they are. We're ready and still want to avoid missing that point of no return (portal Vein thing).

And finally, I feel okay. Could be better and i'm sure it could be a lot worse.

Hope you're holiday is fantastic and thanks for the texts, calls and support.

Sam

 

One year ago today was.....

 

A day full of surprises including my trip to the ER where they told me to follow up with my primary as they saw something on my scan.

 

Fast forward to today. Received a call this morning from Dr. Del Chairo (DC) who said he talked with Dr. Ed and they feel we should try the steroids and come back in a month for a scan. Ahh… What? Yesterday was different and it was really, there’s nothing to lose by putting you on the steroid and lets schedule surgery and now we’re waiting a month.  So, here is the bottom line, DC does not want to make the call so We’ll make it. He is on his way out of town for a week and I’ll connect with him when he gets back to get me on the table. We cant handle the roller coaster and if it turns out I make the wrong decision, I’ll live with it. In 2 months, from Mid March to late May, this thing changed enough and I’m not waiting to pass that line where they cant do anything. It’s been a YEAR… DC said today that’s a good thing as it’s clearly not too aggressive but it’s been a year.

As it’s Tuesday, the Multi Disciplinary board met and discussed my Pancreas and Dr Ed called after.  He said the board agree with the steroid and he sent a script for Prednisone and I’m supposed to start 40MG a day tomorrow and also received an Antibiotic they want me taking 3 times a week. He expects I’ll feel better with the meds, it might increase my appetite and give me more energy so that’s a boost. The antibiotic is to fight off any bugs as the immune systems is a little compromised. So, we’ll start this up in the morning and see how I feel.

At some point this afternoon I went to lay down as I was having a tough time. It’s hard to pinpoint how I’m feeling and I guess I’d say it’s a combo of Acid Reflux, a stomach ache and being that guy on america’s funniest home video who gets kicked in the gut by a horse. Unfortunately, it comes and goes and it wrecked me today. There are also these pings that show up and the Dr’s office asked, on a scale of 1-10, whats the pain level.  Well, Doc, some times it’s pretty minimal and a 3-4 so I can hold my breath and get through it and sometimes, it feels like my ribs are splitting apart and I find myself unconsciously grunting or making a sound to deal with the pain. But don’t worry doc, then it goes back to zero…. Sounds like something we might want to investigate…. Like last summer.

As I was resting today, no book, TV, music, phone or Ipad, my thoughts were all over the place. I realized I didn’t post anything for about a week and imagine a few of you were looking for updates. Here’s where it gets tough…  What am I going to say?  Feel like shit today. Really suffering at the moment. Do you know what it’s like to feel sour for a year?? I do.  I started wondering what kind of updates I gave during chemo then realized that’s different as the treatment last months and we might get there with this. I’ve never read the older posts and cant imagine I will. There’s this strange line between medical details for family and friends vs sharing my thoughts or how I feel and, as I said above, I was all over.

I’ll mentioned that the Santa Susana stuff reminded me of a 10,000 Maniacs song called Poison in the Well and then I thought of the map they showed in the documentary littered with spots across the country where the government tested or produced chemicals without really knowing the long term ramifications. Of course, we’ll never know if it had any impact but living under 10 miles from a nuclear meltdown cant be great. I’ve watched the Simpsons.

With it being such a crappy day, I will share some of my thoughts and I’m giving you warning. If you don’t care, probably time to close your browser and I’m not offended.

Maybe the worst question to ask me right now is “how are you?”  I don’t think you’re really ready for the answer and you probably wouldn’t know what to say if I told you the truth.  While watching that documentary, it occurred to me that those babies going through treatment are probably the most authentic patients as you can see and feel whats going on with them. I’m telling you, when seeing one of those little girls resting during treatment, I felt it and I’ve been there.

So, whats it really like for me?  I think you have to break it into physical and mental:

Physical: I mentioned above how I felt today and there’s a good chance I’ll feel that way tomorrow. Maybe the steroids will help or maybe I’ll have another flare up of Pancreatitis where I can hardly breathe. While the little girls show you how they’re feeling, I don’t believe adults do as I know I try and lessen the conversation for the person I’m talking to. Do they really want to know how I’m feeling…. Probably up to an invisible point and I believe, if you have others in your life going through something, they’re not giving you the full story.  Many reasons including how personal the physical stuff is. Would you just tell anyone who asked how you were doing about all of your medical stuff? Probably not and I understand I’ve opened this door and again…. There is a line somewhere.  For those of you who know I’m not a great sleeper, when I was off over the past few weeks, I was sleeping 3-4 hours during the day… every day. Just not normal and my body was tired/worn out.

 

Mental:  Yea, so this is the biggest mind fuck as we’re stuck and a year into this roller coaster ride. Shit is changing daily and its hard to share the details as I don’t want others to have pity on me for what I’m going through. When I had that scan a few weeks ago, the tech looked at me like I was a ghost and it was upsetting. On the other side, Dr Ed was right there with us and no judgment.  Maybe you’ve had medical issues and maybe they’ve been potentially life threatening. What did you think about??  Yes, I’m doing my best to be positive and I don’t believe its uncommon or wrong to think about death and the impact on my family.  I’ve had a couple dark days not knowing how this will end and we still don’t know. It’s hard to watch family trying to understand where this is going and when you ask me how I’m doing, its hard to be honest.

Please, don’t ask. Sorry for the bluntness but it doesn’t help. Most of you are pretty smart so please come up with something else to say.

Lots to consider today and, 8 hours after I started feeling crummy, I still feel crummy.  Just as I finished writing that last sentence, I knew something was wrong and ran upstairs to throw up. Not sure what that’s about but it was the first time it’s happened during all this.

 

With all that said, until we have movement, I’ll drop a note if things are changing and just know, if I’m silent, I’m not feeling well.

Thanks again for checking in with us. Its amazing to see the support and, the reason I never reread any of my posts is I want to share how I felt at that moment…. And this is how I’m feeling today.

 

Sam

Dr. Ed.....

His full name is Dr. Edmundowicz, but the nurse called him Dr. Ed and that worked for me. He is the Medical director of the Digestive Health center at UCHealth and we met with him today. You can tell a lot by how the a Dr looks at you as they walk in the room... and we instantly liked him. Right to the point as he stated there was nothing in my test results showing a connection to Autoimmune Pancreatitis (AIP) and really no reason to do the steroid therapy especially because the meds and full review time can be up to 6 months. He's a 30 year MD and said he's never seen my situation before and felt, at this point, the only way to understand what's happening is to have the surgery and trust that Dr Del Chairo will leave as much of the pancreas as possible (they would biopsy while i'm in surgery) based off the patholoy. He provided additional details about the diabetes as it's not a typical type 1 or 2 because the pancreas is gone, discussed what having an insulin pump is like today (vs just 5 years ago) and acknowledged, there is a chance I could play hockey again by disconnecting the pump while playing....  He also admitted having the insulin pump is kind of cheating as I could eat as I wanted, with little concern for blood sugar, and the pump would do the heavy lifting although he didnt recommend it. 

While it's not what we wanted to hear, it was a good conversation and somehow not as scary.  We asked his thought on how I got sick and he said there are only 2 influences:  Genetics and environment.  As I mentioned, he doesnt know what to call whats going on with me. He was going to call Del Chairo after we left and discuss next steps.  Maybe an hour after our visit, he called and mentioned he talked with Del Chairo, who is getting ready to travel out of the country for a few weeks and asked if i'd be interested in trying the steroids as nothing is going to happen right away. I asked about potential side effects and he said while sometimes people feel sore, usually they react well to the Steroids. I said i'd try it and checked my Health portal to see if any notes from Del Chairo's group as I had sent a message that we met with Dr. Ed and asked what's next. In fact there was a response from them saying they would call me this afternoon to talk about the plan.....

Later in the afternoon, as I was having some of these random stomach pings, I laid down for a few minutes and checked the portal again to discover some notes posted from last Tuesday's visit. In them both Del Chairo and the other Dr he had in the room, provided a recap of the meeting including  mentioning in his follow up notes we'd meet with Dr. Ed today and then scans again in 3 weeks....   While we didnt ask him if he was going on vacation, it's clear when we saw him last week he was aware he would be out of the office for a bit but he didnt mention it.  One of the biggest concerns at this point is not going past the imaginary "point of no return" where the tumor wraps around the portal vein and makes it impossible to remove. It was THE question I was going to ask when they called today but they never did. I'm leaning into their experience to tell me a few weeks wont make a difference and then I consider the March scans showed some reduction in the tumor size before ruining our May vacation. I'll send them a note asking to call me first thing in the am.

Couple of things....  I'm okay getting through the holiday weekend as there are 3 Dead & Company shows in Boulder and, when they originally scheduled the surgery for June 12th, I accepted I'd miss them but now, it's on and i cant think of a better place to go before a life changing surgery. If there is a place I find peaceful and stress free, it's anything to do with the Grateful Dead.  Last week was Grateful Dead meet up at the movies and we went on Thursday Night. It was a birthday gift and Jennifer was kind enough to sit through 3+ hours of a June 1991 concert shown for the first time. It was magic...

Secondly, I'm considering looking for a 2nd opinion in the interim. Well, I guess it's really a 5th opinion but, if they're going to cut me open, lets make sure it's for the right reason. More to follow.

Finally, Dr. Ed mentioned environmental influences and after the meeting, Jennifer remembered something my sister Heather said a while ago about an unusually large amount of people in the area we grew up getting sick. I called her and she said Yea, there was a big deal with Rocketdyne in the West San Fernando Valley so I googled it and opened a can of worms....

1st:  The actual Rocketdyne offices, located diagonal from our school on Vanowen, is a 47 acre vacant parcel where they had 2 small nuclear reactors which drained into the wash that split right next to our high school. The site is currently one of the largest vacant land parcels in LA county but is still contaminated from all the years of misuse.  The red area is Canoga Park High School and the purple area is where Rocketdyne used to sit:

2nd:  The Santa Susana Field Laboratory. Today was the first time i've heard of the laboratory and blown away to find out they had a nuclear meltdown in 1959 and hid it until 1979. I'm sure I didnt pay much attention when it was exposed in 1979 (I was 9 years old). I knew Rocketdyne was up in the "hills" as we could hear when they tested rockets and I remember being in Simi Valley once and seeing the huge flame up on the hillside. If you google it, you will see this map showing cancers and autoimmune diseases reported by people living in and around Santa Susana:

  The blue arrow above is approximately where I grew up in Canoga Park. Pretty concerning for the people in Eastern Simi Valley as well.  This map shows the distance from SSFL:

There is a fascinating documentary called "In the Dark of the Valley" as parents realized their kids were getting sick with rare brain cancer usually seen in 1 out of a million kids but there were many of them at the Children's hospital in LA and they realized they lived close to each other and in one case, 3 of them on the same street (although a long street). Apparently there are many people we know/knew with little or no family cancer history who lived in the west valley and ended up with Cancer.

I'm not saying my current or prior health challenges were caused by this but could they have been??  We drank out of the hose and the water came down from SSFL....  Is it possible?  Anyway, that's what happened today and it's fucking nuts.  I'll let you know what the doc says when he finally calls....

Appreciate the continued calls, texts and emails. You're super.

Sam

A couple links if you're intrigued 

https://parentsagainstssfl.com/

https://www.dailynews.com/2022/08/05/tainted-groundwater-from-old-rocketdyne-site-has-inched-toward-homes-and-la-river/

https://spectrumnews1.com/ca/la-west/la-times-today/2021/06/12/santa-susana-nuclear-meltdown-1959-impact

Happy Birthday to me......

We had the follow up with Dr. Del Chairo scheduled for 3:45pm this afternoon.  The Dr showed up around 4:30, had 2 assistants and a Med Student from Italy with him. He said i'm the most discussed pancreas the multi disciplinary board has ever had.....

With the results of last week's procedures and discussions with Dr. Shah's (GI Dr who did procedures) and Dr. Wani (3 prior EUS's), Del Chairo's suggestion was for us to meet with the head of UC Health's GI department and discuss treatment of Autoimmune Pancreatitis. While in the office with us, Del Chairo called the GI Dr, talked with him about my case (he was familiar as he is the GI Representative on the board) and they were able to schedule us for next Monday. This feels a little like a hail mary before committing to surgery and, it's my understand, even if steroid therapy (cortisone) identifies and solves the pancreatitis, we still have some issues with the growth on the pancreas. It seems to us, 51 weeks after my first office visit, if this was a solution, it could have been discussed and tried a little earlier in the process but, the good thing is the protocol is for 2 weeks of steroids and they would know pretty quickly if it's working.

So, lets say the steroids work and solve the pancreatitis, that leaves us with the "tumor" on my pancreas. I think this is the first time Del Chairo has called it a tumor as they've been referring to it as a growth or lesion or mass, so that's changed and here's where it gets sticky. It's not going away, is currently not cancerous but it's growing, causing me pain while impacting the bile duct and portal vein. Last week, they dropped the stent in so it's helped with the bile duct and my Bilirubin was .9 today (was over 6 in OBX). Today he mentioned the Portal Vein and a concern we dont have a lot of time to make a decision (weeks but probably not months) as the tumor continues to grow, it's growing around the portal vein and at some point, the vein could be engulfed by the tumor and we wouldn't be able to do surgery. While he didnt give us a timeframe, it is an additional concern.

What happens if the steroids do Not work? We'd be back to discussing surgery and, at this point, what surgery. While we've talked a lot about the Whipple (remove a portion of the pancreas), there is a reasonable chance they're end up doing a Total Pancreatectomy because he wouldnt want to leave "something" on the tail of the pancreas.  He didnt rule out the Whipple and even told Jen it's not off the table and possible they could try to biopsy the tail while i'm in surgery, but his job is to clean me up and give me the greatest chance for post surgery success. He's asked a few times how I would feel if the entire pancreas was gone only to find out later there was no cancer?  Not sure I have the luxury to consider it as we might need to just make a decision and live with it.  

This is from Columbia University:

Total Pancreatectomy

In a total pancreatectomy, the entire pancreas is removed. Similar to a Whipple procedure, a portion of the stomach, duodenum, gallbladder, and local lymph nodes are also removed. The spleen may be removed as well. Because the entire pancreas is removed, the patient becomes an insulin-dependent diabetic for life. For this reason, the procedure is only used when disease has spread so extensively throughout the pancreas that healthy tissue cannot be preserved.

Total pancreatectomy is sometimes used prophylactically to prevent onset of pancreatic cancer in patients found to have precancerous conditions like IPMN. While the procedure ensures pancreatic cancer will not develop in the future, it also guarantees insulin-dependent diabetes and should be discussed thoroughly and carefully with your physician. 

Total pancreatectomy typically requires 5 to 7 hours.

Not very appealing and the reason Del Chairo wants to exhaust all other options. At one of the initial meetings, Jennifer asked how aggressive the "lesion" was and he said he would not expect much change over 6 months and, in March, they said it was shrinking. Now, a couple months later, it's spread..... what if we would have done the whipple in January??

Where does that leave us today?  We will meet with the Dr's on Monday to understand how quickly we could get the steroids started, what the side effects are and how long before we know if it's working. In the meantime, when I asked him about the pain in my abdomen, he said I have a tumor growing on my pancreas and it's probably bumping into other "things" causing the pain. Glad they've given me some meds to help....

Thank you for the continued texts, email and calls and the birthday messages. We appreciate the support!

Sam