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Wow, what a ride this has been…

 Alright, let’s see where to start. Yesterday ended up being quite the ride. Throughout the day we had a new plan in place. Instead of doing a surgery, I was going to get some tubes put in to do both, empty my stomach and to give me nourishment straight into my small intestine. This was to happen at 7pm and then it would still put me in a position to get the tube out of my nose and be able to go home. Well, then came the news that I am also dealing with some blood clots throughout my body. One in my lung and one in my right leg were previously known, but after an ultrasound on my right arm because of a tightness and pain forming, another was found there. That meant being recommended to go on a heparin drip to try to take care of those and make sure I was safe. When the doctor that was to do my procedure heard that, he then thought it best to put the procedure on hold and do the heparin drip first.

So, with Kristine visiting as this was going on, that meant once again that plans were changing just hours before trying to take a solid step forward. I was definitely more prepared this time, but they left us alone to process things a bit. Not much for us to do, but we were chatting and just shaking our heads basically. Always has to be something. Then came in the nurse to tell us that this decision wasn’t actually done yet and there’s been a lot of back and worth between the different teams involved in my treatments here. Come to find out that once the original surgeon started hearing about all of this, he decided that we weren’t going to just keep pushing this all off. He was now armed with a full understanding of my situation, he’s consulted stomach specialists to know he wouldn’t impact future surgeries and was ready to move this forward. So now it’s 5pm and I am getting prepared for surgery to open up a new pathway from my stomach into my small intestine. So in I went, excited to be taking a real step forward. Surgery went well and next thing I know I’m waking up in the recovery room and back to my room last night.

Today was all about recovery. Really everything managed pretty well overall, except for this awfully painful stomach spasm that would just rock me and not go away easily. It’s still there actually, but getting better since I can now gain control of it much faster and get it to pass. This morning I was not and had to just sit still. I couldn’t talk or move without it flaring up. During that though I finally built up my courage to push through and have the nurse take out my nose tube. I told the nurse that I wanted him to just keep going. If I spasmed and started squirming around, he just needed to keep pulling it out and get it done. It worked well and I finally got that thing out of my nose/throat. Now, THAT was a good feeling. Maybe not the pulling out, but not having it in for sure.

Now we were moving forward, and it felt so good. Okay, a lot of pain, so that’s weird to say, but it does really feel good to be making progress. Then to add more steps, I went on a clear liquid diet today (broth, jello, and apple juice) and everything seems to be great. First time I have put anything related to food in my mouth in a week and a half. The best chicken broth I have ever had in my life. 😉 And now I may even get some pureed soups tomorrow. That may sound like sarcastic excitement but trust me when I say it is not.

All the while I have an incredible TEAM working for me behind the scenes. I just keep hearing that line from The Blues Brothers, “we’re putting the band back together….we’re on a mission from God” (https://www.youtube.com/watch?v=24hB9Phwnnw , haha) So now it looks like I may be transferred over to UCLA hospital tomorrow so we can continue to take care of the clots, etc. that need attention still, but also start working with my oncologist on the next steps for that as well. That’s not confirmed yet but is the plan.

Alright, like I said in the title, it’s been quite the ride, but I am one blessed man. I have a TEAM of women behind me that are a force, an incredible oncologist, and a group of nurses here at Huntington that have been phenomenal in helping me through this process. So we just keep looking forward, taking steps when we can, or figuring out a new way when that’s needed. I will get through this, we just need to find the best way.

As always, thank you TEAMjeff. Your support gives me the energy to fight through this battle, and a battle it is going to be. Now it’s time for me to rest and make sure I am ready for the next step coming.

Surgery ✅

Wow, what a ride! Longer update coming for sure, but for now, original planned surgery in the books and went well! A lot of people wanting to do right by me, and I couldn’t feel more blessed in this process because of the genuine care from everyone, including this surgeon who just wanted to do more homework first. That’s what happens when you have such a highly respected surgeon who happened to by in a huge surgery when a good amount of my details came through last Thursday. Now time to recover.

Thank you TEAMjeff! We are off and running now!

Avoiding expectations…

Well, today was quite a ride for me emotionally. I probably should have been more prepared, but as it turns out, I wasn’t. The day started with a degree of anticipation and excitement. Not for what was to come that day necessarily, but for the result of being able to get out of the hospital and start the process of finding the best oncologist for me and making progress forward. Not to mention the idea that I might be able to actually eat sometime soon. Surgery is always a risk and would have taken time to recover. So not an easy day by any means, but what I thought had been decided as the best plan right now.

The day was spent resting up and waiting for a 7pm scheduled surgery. I won’t bother you with the details of how this communication went down, but rest assured it wasn’t smooth. All of the sudden around 3pm I’m just told it’s not happening, almost just in passing as they are talking about getting a different team together to do the major surgery soon instead. Wait, what? I have surgery scheduled at 7pm and all signed on the release, but not, “that’s not going to happen.” I’d love to say I handled that well, but that broke me a bit. The frustration and disappointment came out and it was tough for me to take. Maybe I let expectations get to me a little too much, but I thought we had a plan and then, all of the sudden, it was gone. Then the mind went spinning down from there. How do I go see oncologists if I can’t leave the hospital? How do I find the best option for me? It was the most frustrated I have been and the tears definitely ran today.

Now, as always, things work out. This experience seems like it may very well be the best thing for me and lead to a better plan. I am all about taking the best path possible, and I know sometimes that takes time to find. He also had good reasons for concerns. None of that was the issue. It was that I thought we had a plan, I had talked to people that I trust that were all on board, and I thought we were starting this process. It just had me spinning a bit for sure.  To his credit, knowing he wasn’t my favorite person today, came by my hospital room at 7:30pm and called in a favor from a stomach specialist to talk through my case. While, yes, it would have been possible to do the surgery, but it wasn’t in fact the best option. So instead now we are working on getting a feeding tube put in instead. This would be a non-surgical option, give me the nourishment I need to get out of the hospital, allow me to find the best doctor to help me start treatments, and in the end, have a cleaner canvas so to speak when it’s time to remove the tumor after we try to shrink it down a bit.

On the journey goes. This is going to be a tough one, I can tell, but I am ready. I can confirm that my emotions today weren’t about losing hope or anything even close to that. Just disappointment of not being able to take the step that I had convinced myself was the best step forward. Now we learn and adjust. We get rid of expectations and focus on the steps we take and doing so the best I can. There will always be a new plan, likely a better plan, and I know that expectations only get in the way. I guess I needed this reminder today and trust me I won’t forget it.

In hopes of getting this process started tomorrow, but being ready to do whatever I can, when I can, now it’s time to get some rest. Thanks all for being a part of my journey and, of course, thank you to TEAMjeff for the amazing support throughout this entire process. Here’s to a new day tomorrow!

The stage is set…

Information received and it is now time to go to work. After an additional chest CT scan, we have found the official diagnosis to be stage 3 stomach cancer, having spread to lymph nodes in my chest. Again, not exactly what I was hoping, but it answers the first of many questions to come and gives us the direction we need to start going.

First things first, hopefully I am able to get a laparoscopic bypass surgery done tomorrow that will basically create a new entry point for my stomach to move food into my small intestine, get me out of the hospital, and being able to eat. Then it’s time to start putting together the best team that I can to find and start my best treatment.

Which is basically what I spent today doing. Trying to lean on the incredible people I have met through my cancer journey and advocacy and see if they have any contacts in the stomach cancer world.

It’s been quite a ride of emotions today, but I can’t stress enough how thankful I am to have TEAMjeff behind me and all of the incredible messages I have received during this time. This isn’t going to be easy or quick, but rest assured I will get through this and your support means so much to me during the journey.

Thank you all, my heart is full

Well…. Here we go again – Sept 23 Update

Today might be short, as I only have partial information anyway. After a solid day, pain well managed overall, and a great visit with K, then came the initial news from the biopsy. If you haven’t guessed by now, it is an adenocarcinoma and it’s time for me to kick into full kick ass mode and take care of business.

This rocked me a bit though. Disappointed, bummed, scared, and any number of things describe my feelings when I heard the news, but you can trust in one thing, I will never give up HOPE. And if I have HOPE, then I am going to fight with everything I have to kick this thing to the curb. So, in normal fashion, I can’t just sit around, so instead it was time to notify some people first. Kristine obviously first, but then the always toughest one was talking to Trenton. It crushes me to negatively impact his life at all, but as I told him, the best thing he can do for me is for him to do his thing.

Then it was time to rally the troops. Even though we aren’t sure where this is coming from quite yet, we rally those that I am closest to and can help me navigate the next steps. Dr Goldman from UCLA having responded almost immediately wants to see me ASAP, and we will likely be able to do that next week sometime. From there the TEAM has been wonderfully responsive and ready to help. The nurses already have my CT scan CD in my hands so I can get it to Dr Goldman for review. We’re getting things set up to send my tissue out to get the mutational breakdown tested. While I wish I could do more now, I’d say that’s not bad for a couple hours of after hours work. Blessed to have TEAMjeff in my corner.

From here I need to talk to my doctors treating me here, but my push at this point is to get a bypass done ASAP so I can get out of the hospital and be able to eat. Then we can really start pushing forward based on the full biopsy results that should come in tomorrow. I’ll also be pushing to do any scans possible while I sit around the hospital anyway. Seems an appropriate use of time since I am in a hospital anyway, but that’s not my decision in the end. Just a push for action now, so we can find the best path as fast as possible.  

 As always we focus on the things we can control and take the rest as information. This isn’t going to be as straight-forward as I was hoping, but it also isn’t going to change the final result. It just means that it is time for me to work my process, learn and adjust, and then keep fighting until I have the result I want.

I believe…
I am strong…
I am ready…
And I will WIN!

Thank you TEAMjeff ! I am going to need your strength during this fight, so consider this a rallying call for the big fight ahead.

Sept 22nd Update

Well, believe it or not, not all days are created equal when you are in a place like I am now 😉, and today was one with probably more downs than ups. Don’t worry, nothing major, and nothing I can’t handle, but just on the rougher side. That said, when I say “day”, I’m not referring to the normal calendar day, more the between updates type of day, so when I finish this I am off to a new day. 😊

Last night ended up being the roughest night of pain that I have had during this whole experience, which is saying quite a bit given the discomfort I was in before the hospital. Spoke to my GI doc before bed to confirm the plan for today, and I had asked him about the tube sucking at the side of my stomach now when it was empty and the intermittent suction was on, but he said I still needed to have it on. So, pain meds in to help me sleep and I tried to go to sleep, but that ended up being an exercise in futility. And to the stomach pain, that a picc line goes pretty deep in your arm and doesn’t just fade away into no pain, it was an uncomfortable night. Three doses of pain meds later and 2:30am, it was finally time I could fall asleep. But then of course, I get visitors at 6am, so a short night it was for me.

Then most of the day spent waiting, resting, and trying to nap only to be woken up by the next doc coming in. Too tired to really “do” anything, but still the days go by pretty fast for me. In case you all aren’t aware, I can function pretty well in solitude, in fact I like it/need it at times. And when nothing is “wrong” or can be “fixed” like days like this, it works pretty well for me to be able to close my door and just be on my own. And that’s not to say I dwell on things or anything like that, it’s not a negative thing at all, so please don’t feel bad for me there.

I’ll share a negative that I think it really more funny that not. I’ve really avoided TV for the most part (now plenty of reasons that I would much rather avoid even typing because it all makes me sad), and it’s because it is amazing how many food commercials there are out here. And EVERYTHING looks SO good. Hahaha. Things I will never eat even. I just crave good meals. I crave going out to dinner with Kristine. When this is all said and done and I can eat normal meals again, K and I have a lot of dates to go on. 😊

Then came the goal for the day, my second endoscopy to get a good biopsy, which will help us set the path forward. For the most part I think that went fine. I didn’t hear exactly, as I was the end of the day, woke up in a fully different recovery room, and the doctors were gone, but I heard it went well. I little more blood this time, so by the time I got back to my room it took some cleaning up of the NG tube, etc to get settled, but that’s all easy enough. But then came on the pain. I’ve been able to manage the days really without pain meds and only take for sleep, so this came on fast, and of course it’s when the nurse is busy AND told the wrong room. So 40 minutes later and pain elevating to 9, that was not as fun. All taken care of now and the plan set to make sure we stay on it for the night, so all set there as well.

All short-term stuff, and in the end, I have way bigger things ahead of me, but not the best day I’ve ever had. BUT, that’s not to say I didn’t have some big highlights along the way, to save the day. 😉 Kristine was bringing some more stuff over now that we know I have a good number of days here still, and she included some “surprises” for me. Some reminders of my “whys”, and some incredible cards given to her by different swimmers and families on the TEAM. Talk about timing being everything and out came the tears of joy and this deep sense of emotion I get every time I sit and really think of what #TEAMjeff has meant to me through these journeys. A had received a gorgeous orchid from the Booster club before (it’s awesome and perfect, thank you) and then a master swimmer who works here on the floor as a nurse even brought a plant by tonight. So, of course, I had to set it all up and organize my room a lot more today, because what else would you do. 😊

Then came the BEST news of the day, the hospital has adjusted visiting procedures and I get to see K for an hour tomorrow (hear music playing and the crowd going wild in my head, haha).

Look, I wanted to share the rough parts, as I only think it’s right. I’m not positive because it’s this walk in the park, but rather because that’s the option we have. I could complain about this stupid nose tube and the above, but that’s not going to make anyone feel better, least of all me. Or we can accept that downs happen, and struggles come and go. Which is an important distinction. Struggles come and go much faster when we aren’t dwelling on them. We all get stuck from time to time dwelling on the struggles, I do it all the time with the little stuff (which is dumb and I’m working on that). So, I’m not writing this for sympathy, just sharing. I hope you can see already that I am past it, as it is behind me. Tomorrow (now) is a new day and I am ready.

Tomorrow we wait for results. Should be much fast since it isn’t the weekend, plus I have incredible advocates that like to push things for me. I don’t see much happening tomorrow other than the results (crossing fingers they are ready tomorrow), but that means come Thursday we could be headed down whatever path I will be on.

On we push, with #TEAMjeff as the wind behind my back urging me to push that much harder and knowing that I GOT THIS! Thanks all, and now it’s time for me to sleep.

Sept 21st Update

Well, some progress made today, but not quite the progress we were hoping. The biggest wait so far was needing to see the biopsy results to know the path forward. The biopsy results came in, but unfortunately were inconclusive. Meaning not good, not bad, just not being able to see the tumor cells enough to make that call. That means no decision on a process forward yet or the type of tumor it is yet.

Next up comes another endoscopy tomorrow, early evening. In which they will utilize one that can reach a little further and be able to grab a better tissue sample to be tested. (Mike P, I am also asking about a big sample so we can send over to FMI, so I will be in touch in the morning to talk about that if I can.) The new scope, combined with the fact we got my NG tube working today and clearing all the stuff that couldn’t empty from my stomach, should make it much more possible to get a good sample. Unfortunately, during this process my stomach had expanded to like twice it’s normal size, since things didn’t have anywhere to go. But the tube drained a ton today and now makes it seem things are back to normal size or at least smaller since the tube now hits the sides from time to time. So progress there in being ready for both the next endoscopy tomorrow and which ever surgery needs to be done when the results come back.

Also put in a picc line today (bigger iv line), so I am actually “eating” dinner for the first time in a LONG time. By that I mean they can give me actual nutrients now through my IV, which I have to think is a good thing and will help me continue to strengthen my body. Even though I already feel much better.

Otherwise I am doing well. Staying strong and ready to fight. Just need to know which direction we are going. Mentally things are staying strong. I’m not relying entirely on it until we are done, but another doc to confirmed that it does not look like it has spread anywhere in the area, so that is also great news.

That’s it for today. Staying strong thanks to all the support and positive messages I receive. Plenty to do, so boredom just isn’t an issue. Thanks to all and I’ll see you on the other side of this soon enough, it just won’t be an overly fast process and plenty of work to do in the future.

Sept 20th Update

Just a quick update today.

First things first, and this is what always gets me, I cannot thank all you enough for your incredible support. Your messages mean so much to me and drive me to fight that much harder. TEAMjeff continues to amaze me actually. Which if you know me as a person, show me love and make me feel truly supported, and I will do everything I can to answer the call. So while just writing and sharing my story put me in a great place to start this fight, all of your incredible support just puts that over the top. Thank you all.

Given that the growth is creating a blockage, I am not able to eat. Because of that, I am needing to stay in the hospital. Since the biopsy was taken Friday though, we are hoping to get those results tomorrow, which will set the path forward. There has been a big push for surgery to get this thing out of me as quickly as possible and it looked like it could be as quickly as tomorrow. After a good conversation with the surgeon from USC (I am at Huntington Hospital, but they are bringing in someone from USC for the surgery), I understand better the importance of understanding what it is before we just cut it away. He is very encouraged at the outlook for this overall, and if is it a malignant tumor, it would be an important step to treat it first, which would change the approach of just cutting out. So, while not the fastest way possible, it is all sounding like we are on a good path.

For now, we wait and prepare the take care of business when we know what it is. I am feeling 100x better than I was when I came to the hospital. Blood lab levels, BP, and heart rate have returned to my normal healthy levels (lack of food, sleep, and hydration was taking a toll on me). Only annoying thing at this point is that I do have a tube up my nose and into my stomach to get it and keep it clear for any possible surgery needed. They offered to take it out yesterday, but since it was better to keep it in, in it stayed. I’m committed to doing what is best for me and the process. Annoyances and small pains like this are just part of the process of getting this done right.

Thanks all and I’ll update you soon.

TEAMjeff, thank you!

Another fight coming…

(Facebook post)
Hello Friends,

I have some not-so-great news to share today. So, if you are avoiding others issues to help yourself, please feel free to skip this. I am sharing or “going public” now for two reasons. The first being personally it makes it much easier for me to deal with things and not have more and more texts roll in asking what is going on. The second is I personally believe we live a shared experience, and while I love my life, there are journeys that if I can share and make someone else stronger for it, I want to do that for them.


Quick Update on health:

As some of you may have heard me talk about over the last couple months or at least noticed I have been losing weight, I have been experiencing a worsening of GI issues. During this time, we originally thought it to be stress related and maybe acid reflux/gastritis. While trying to treat that, things have gotten worse and I am now in the hospital to find out exactly what is going on. Thanks to some amazing friends and Doctors, things have been on fast forward here. Admitted yesterday because I was not able to hold food down anymore, we have already started an onslaught of tests. We are not done yet, but we do have some news and ready to move forward.

After a CT scan of my belly, there has been a 3cm mass found that is also creating a blockage, an endoscopy today confirmed both and a biopsy was also taken in the process to figure out what exactly it is now. The results will take a few days. Of course, there is a scare of my lung cancer returning, but that is not the best guess at this point. That said, it is possible that it is a cancer. So far through the scan, etc., it does not appear to have spread, which would be great news if it does turn out that way.

A surgical option is likely in my future either way.We have more tests to take, results to analyze, and decisions to make going forward, but I wanted to get this out there and be able to focus on the things I can do. Control the controllables as we say, it is all the same process, and I am ready to follow mine to get past this quickly.

Updates from here will likely be posted through my blog site of teamjeff.org , if you are wanting to be updated at all.

5 years ago I promised myself to never give up HOPE again, and I have no intention of doing so now. It’s a tough time with all that is going on, but I consider my ability to be positive in the face of anything that is thrown my way to be what I am all about, so that is my focus. We will stay positive, hold HOPE as the strength it is, and be ready to fight for everything. If cancer thought I was tough last time, I’m coming after this with everything I have to get past it and back to living my life.

Belief, Hope, and Strength…. Here we go!

A lesson shared is a lesson strengthened….

There is one thing I think we can all share, this time has been crazy for all of us. While that obviously has implications into what I wanted to write about today, it’s not really what I wanted to talk about. It more goes towards my efforts to take better care of myself and continue to learn and grow throughout my life. Hence the title of this post, I am really hoping a lesson shared with all of you will equal a lesson strengthened for me personally.

The lesson is simple, I think we all need to remember to take better care of ourselves. I mean that in general for sure, but even more I think it’s in times of stress, motivation, pressure, drive, commitment, etc. As you may notice, it really doesn’t matter whether you have deemed it positive or negative at the time. There may be different paths taken for the positive or the negative, but the results on you can easily be the same.

My recent experience had both pieces involved I think, which led to a big impact on me personally. I’m sharing the lesson just to share, I’m not trying to compare to anyone else, as in the end, that doesn’t matter at all to the impact on myself. I do think it lets me explain a bit of where I think I need to strengthen my process and this post is part of that process.

Quarantine I think offered its own set of challenges to everyone. We were lucky enough to stay engaged with our TEAM during that time and really be able to shift our time entirely on working different pieces of the swimmers’ process. So the balance of time remained pretty normal to start and I do enjoy my personal time. Not the ideal situation by any means, but I had been able to find a good balance of a routine which included fun side projects like building planters or planting our garden. Then came time to see what we might be able to do to open up, and a committee of 5 was formed at the Center.

So in a driven fashion, looking forward to a way to get our swimmers back in the water for both their minds and bodies, I spent the next 6 weeks and roughly 12 hours a day for 7 days a week, focused on getting this all done in a safe manner for all of our members. This drive and commitment lended itself perfectly to achievement, and in those moments, it felt as if it was needed and I’d take care of myself after it’s all done, or so I thought. Then came the stress of the unknowns along the way, all of which could have ended up in nothing happening. So we had both going on in the positive drive for some type of achievement and the stress of situations that could have major impacts on day to day life, etc.

It all paid off and we were back in the water, so otherwise back to the “normal” days of planning workouts in the new environment, keep the TEAM informed and trained in the new procedures, and spend 4-5 hours a day at the pool. It wasn’t exactly the recovery time I was thinking I’d have to recover. The again, it wasn’t about the recovery time, it was more about the impact I allowed it to play on my normal daily process. Tough to turn the mind off that quickly, so sleep definitely fell off. Nutrition stayed on our foods, but turned into more snacking to get through versus meals. My daily meditations got replaced with “needing to jump into things”, as I allowed myself to believe I was in a good place because of the drive I was feeling to accomplish something instead of a true balance in my mind. When I needed it all most, I allowed myself to get distracted by achievement and failed to take care of myself along the way.

I need to learn that lesson for sure, but I like to question things a bit more as well. Yes, I can clearly see that I needed to stay on top of my process, but as much as that may be true, the results in those unilaterally focused and driven times are almost always great. I am very proud of the work we did as a committee, on behalf of the TEAM at the RBAC. It wasn’t about anything but getting things done and people back to doing something that means so much to them in their lives. So it is easy to see how we fall right back into those bad habits when that next goal, focus, or full commitment comes up.

It can be an addicting thing, that full commitment to something. The energy given at the time is often more than you’ve felt before, so can trick you into falling off of the other things that you have normally done to take care of yourself. And once you do, you are destined for a crash. Be it mental or physical, you are on a direct line for that crash and there will be way too much momentum to avoid it. For me it’s been physical this time, but man what a crash it has been and I have no intention of putting myself through that again, so I share it here with you in hopes of helping us all.

Remember to take care of yourself. It’s never wasted time, even when you don’t feel like you need it at the time. Some may need to learn what you need most first, and I highly suggest understanding those things. The trick then is to be committed to that process, especially when you don’t feel you need it, so you can avoid that feeling of need that much more in life.

Thanks for reading and hope it helps you…