Life update!

It’s time! Getting ready to rejoin the Condors tomorrow in Naples, Italy and start year 19 at Rose Bowl, and it has me lost in what this crazy journey called life puts us through. Just a quick update on life!

A year ago I had to give up my shot at leading the Condors, heartbreaking at the time, as I had another fight to focus on, and what a year it has been. A year that almost doesn’t seem real or even that it could have all happened in a year. From just the basics of doing my best to lead 380 swimmers (and of course their parents) through a global pandemic like never seen, to fighting stage 4 adenocarcinoma (my second time through a stage 4, a special kind of mental torture) and getting to do the first two weeks of trying to recover from losing like 60 lbs leading up to it and surgery to allow me to eat, because of Covid and being stuck in a hospital. Then we get into month 2 by adding in chemo and the fun that comes along. One of those being a side effect that left me taken to the emergency room with tachycardia of almost 300 bpm and needing 2.5L of blood drained from around my heart. Taking that all the way to a clear scan. It’s been a ride for sure.

But then we know life is always unpredictable, and if you believe you are tested with the things you need most, I apparently need to work on my mindset and dealing with unknowns. My most recent scan showed the slightest of a new nodule (2mm) in my lower right lobe. The Dr isn’t too concerned at this point given the size and other old nodules in my lungs from before, so for now we just wait and see.

Knowing that will be tough to ignore over the next few months, but at the same time I find myself so grateful for life. For my family and the ULA that we share. My friends that are always there.

Life is a crazy journey but isn’t it amazing? There will be highs and lows, you’ll understand some but not all, but in the end we just need to enjoy the journey the best we can. For me it’s the same as I try to coach, we just need to focus on controlling the controllables. Such a simple statement, but does two crucial things; 1) you put time into the things you can control to any degree and not waste time/energy worrying about other things and 2) by nature of focusing on the things you control, you automatically set your mindset to a more positive place by taking action.

So now it’s time to live life and make the most of every experience we have. Thanks all!

The update of all updates…

There’s no other way to do it but to get right to it. If you haven’t seen through social media or heard otherwise, my most recent CT scan came back NED (no evidence of disease). It was actually shocking to read. I was expecting a good report, as I have only been feeling better and better, but to see the report be the cleanest I have ever seen throughout this entire journey, it floored me. My hands shaking just trying to read the rest of the report. Yes, I skipped forward to the summary first, as it is usually a little easier to read than the medical details of the report itself, but this one was pretty easy the entire read. It turns out it’s really easy to read “clean” on these reports.

What does that mean now? Well, to be honest, I don’t quite know. My doctor was on vacation that week and I am content just living my life. My guess is we will continue immunotherapy for a while and probably need an upper endoscopy and maybe a colonoscopy to check things out a little more, but otherwise I appear to be as healthy as ever.

It’s all still a bit crazy to me. I read that report over 2 weeks ago now, and I think I am still processing it. Celebrating above all else of course, but there’s really this crazy range of emotions and feelings that go along with it. Relief from having this hanging over your head all the time. That was a weird one, as I felt it physically in my shoulders and arms as things just seemed to “let go”. Then there’s what I can only compare to as survivors’ guilt. Twice now I’ve stared having a year left and now twice seeming to get a new lease on life that so few get in my situation. It’s humbling when you allow yourself to process it that way. Being able to allow yourself to see into the future just a little bit further than you’ve been allowing yourself during this process. That light now shines a little longer into the future. The joy of being here with my family and getting to see my pride and joy do his thing. Getting to be in awe of Trenton’s process, his drive, and his ability to handle anything and everything that is thrown at him… and to be better for it. Being able to plan a future with K, for us. Knowing what’s important, what we have to offer, and making sure the focus is on our own wellness in the process.

No doubt if I thought I bit longer I could share some of the other emotional journeys I have been on since this news, but in the end it all circles back to feeling blessed in my life and to have the incredible people around me that I am lucky enough to have in my life. Then have TEAMjeff behind me once again in this journey and keeping me going in the toughest of times, which there were definitely some of those on this journey over the past 8 months.

So, with a huge smile on my face, a heart full of happiness and love, and a feeling of gratefulness that I will never be able to accurately describe, I share this news and thank all of you for being a part of my journey, supporting me, sending positive vibes and prayers, and every little thing that has meant so much to me. For now, it appears, We Did It!

And life goes on…

I can’t believe I sit here typing this and it’s been a month and a half since my last update. On the positive side, my health is seeming to be great. I’ll have another scan here soon to get a better idea for sure, but I’ve otherwise been feeling great and things have been back to basically normal. My treatments have been backed down to Opdivo (immuno) only and pushed to a double dose so that I only have to go back in every 4 weeks. To give you an idea of how much less impactful immuno is on my body, this last one I was able to get treatment on a Wednesday, rest the remainder of the day, then drive to Utah on Thursday, and then coach a 3 1/2 day meet. What a great feeling to be back to some sort of normal life physically! And a little bonus to be named the Sectionals coach of the meet due to my swimmers doing a great job over the past year and looking great in the water.

Mentally though has been a bit of a different story. I’ve found that while physically I’m not as impacted by immuno, the mental and emotional parts are something I need to watch and this time was no different. Call it Covid fatigue; call it not feeling appreciated/valued for the tremendous amount of work that has gone into this past year; maybe the let down of coming off the high of getting to coach at a meet again, only for it to be challenged upon arriving home and knowing that it was going to be a new fire drill, take more time, and more effort behind the scenes; or maybe it’s just everything to deal with from Covid to cancer and I’m just tired.

I can’t lie, I’ve struggled a bit recently. Putting up walls to focus only on what needs to be done (family, health, work), but then feeling like a failure when I can’t get everything done. My advocacy work failed, as I couldn’t find a way to attend our lung cancer summit, and I am otherwise just not feeling like my normal self. Easiest to say I’m “tired”, but it’s not about the physical. I’m tired of so many different things, and not sure how to get around it yet.

So I return to my word of the year, strength, and I remind myself that strength isn’t about how strong you feel or never being knocked down but rather about what you can do when you are challenged and how you get back up every time. So I have apparently wished this upon myself by picking the work strength as what I want to work on this year, but I will get through it.

And I’ll get through it with the help of so many people. Thank you to our friends Joe and Amy for making the drive to hang with us in the backyard, it’s really been great and helped so much. Thank you also to Speedo and Conejo Swimworks who have teamed together to do a t-shirt fundraiser for TEAMjeff, of a cool shirt designed by one of my swimmers. (http://www.conejoswimworks.com/teamjeff/)

And of course, thank you to TEAMjeff for helping me get through this journey! With hope, strength, and TEAM we move forward!

Feb 12th – Update – a “yo-yo” life for now

Every time I think I will be on top of updates and just taking time to write some more it seems that time just seems to fly by. For instance, I’m still having a hard time processing that it’s Feb 12^th, 2021. Then comes the ups and downs, a two-week “yo-yo” process that begins with my Wednesday treatments.

It’s a little different each time, but it takes me a solid 4 days or so to get over the initial hit of treatment (which is a bit relative since the treatment starts on Wednesday, but isn’t really over until Friday morning with a pump I take home with me. The fatigue, nausea, and just this feeling of not being able to concentrate dominates this time. Then a few days of slowly recovering until I am feeling good once again. Then comes a week of feeling great and feeling like a regular person again.

So, in short, I am feeling better and better overall. The treatments aren’t easy, but health wise I believe it’s only getting better. I’m back up to my normal weight now, building back some level of strength/cardio, and my blood markers continue to be great (normal levels). Blood tests are about as regular as I have ever had as well, other than a few being impacted by the treatments.

And now comes time to start backing off of chemo. We’d already taken a piece off these past two treatments, but the next one will be even bigger. Turning into only immunotherapy and the take home pump (or hopefully we can turn it into the pill form). The pill would be every three weeks and the immunotherapy every 4 weeks, so it will be less overall trips and hopefully much less of the side effects as well.

The only other piece that will come up soon is the next scan. Amazingly enough it’s already been 2 months since my last one. We’re just trying to see if we can get a PET scan ordered instead of a CT scan, so my doc can get a more complete picture of where the stomach tumor stands, etc. If we can’t do that, we’ll fall back to the CT scan.

For those of you that I have been delayed on responding, etc., I apologize. I have always had a tendency to go inward and just focus on the essentials when things start to get overwhelming, and with the treatments having me on this up and down roller coaster, it’s just been difficult to stay on top of everything. Then we can add the fun of doing this all during a pandemic and trying to get our swimmers in the water, in a safe environment, for their physical and emotional wellbeing.

That’s the ride I’ve been on recently, but don’t worry about me. I’m fighting through with all the hope and positivity that I have, and I will get through this. I’ve said from the start that I am ready to fight for every day that I can, and while this journey has been more difficult, it will not stop my fight. So instead of fighting the fatigue like I am normally driven to do, I rest. I take care of essentials, but otherwise focus on taking care of myself first.

As always, I can’t thank you all enough for the love and support that you offer me during this time. #TEAMjeff offers me continual strength the fight through these times, and that support has been unbelievable!

Jan 15th, 2021 Update –

It’s amazing sometimes how fast time can fly by, even when the days seem to go by so slowly. For those worried about me, I apologize for not updating more. I appreciate the support and care so much. The bottom line is that while I don’t have a ton of new information, I do at least understand the direction we are headed in.

I had another treatment this past Wednesday, and I was able to have a great conversation with my doctor. I guess not all of it great, but when I get the optimism in my doctor’s voice and encouragement over all treatment related things, it does help me. The only negative we have come up against is really just a hope that didn’t quite work out the way we had hoped. We knew it had spread to at least stage 3 and was close to stage 4, and unfortunately the cancer cells in the blood around my heart likely confirms it is metastatic and indeed stage 4.

So, what does that mean for me? We stay on treatment, given it’s working so well, but we are going to keep an eye on the side effects. Once those start to ramp up, we’ll cut out the chemo and stay the course with the immunotherapy treatment. So, it’s official that I find myself in a very similar position as what is 6 years ago now, but luckily for me so far is that my response has been just as good, if not arguably better than the first round last time around.

I’ve also been getting stronger and stronger, and found myself on the pool deck for a week and a half straight (in the adjusted form we need to run at now at least). I have some more physical strength to build for sure, but everything else, including my heart, seems to be recovering nicely. So that’s really the health update. From here I think I am going to use this as some therapy for me as well.

It’s been a strange time for sure. I can’t say that I have been down or really struggling, but there’s a reason time has slipped by so much. I mention a lot that I am an introvert I guess because I feel that due to the roles I assume that I wouldn’t be, be in leading the TEAM, doing speaking engagements, or anything else. But that introverted tendency also tends to find myself pulling inward when things get to be a lot. It is not that I am not reaching out for help when I need it. That’s a lesson I have learned and I know I need my mindset for this battle. That said, this has been a battle like none I have experienced.

The diagnosis alone would be a lot to handle, and that’s not to mention to condition I got to in order to find out what was going on. The side effects and heart issue that occurred, resulting in my first ever ambulance ride and more fear than I ever want to give Kristine. That’s all not to mention the idea of doing that yet again. Being told for a second time that you had this mountain to climb. And just for an added little twist, let’s do it all during a pandemic and social unrest like I have never seen in my lifetime at least. Then add in trying to lead my TEAM to learn and grow during this time, whatever we need to do to make it happen.

It’s been a tiring time. I’ve managed to keep my hope and drive to do what is needed alive, but between that and doing my job, it’s seems that’s about what I can handle. So, I’ve allowed myself to take care of myself, and unfortunately sometimes that means withdrawing a bit and just focus on me. (Which is when you see big breaks in blogs.)

I am finding that strength to get up once again. Strength, which I have decided is my word for the year because of the new definition for which I understand it, is all about getting up again. Strength is about the willingness to be vulnerable, to ask for help when needed, and understanding that we are never strongest alone. So, I summon the strength that I have and strive to become stronger through the journeys I must take in life.

Thank you all once again for everything. Things are obviously tough, I wouldn’t lie about that, but things are also great. Things are moving in the right direction, I am feeling better and better (outside of treatment recovery time), and we have a plan moving forward for now. No doubt there is much more to handle ahead, but for now I breathe, enjoy life for what we have, and take care of myself today so I am ready for whatever tomorrow brings.

All the best!

Hope for the New Year

Well, it seems 2020 had to get one last shot in, as I am ending the year with a bit of mixed messages.

On the down side, I have received word that the blood around my heart did show positive for cancer cells. I don’t have very many details on what that means exactly, other than it may impact the viability of surgery to remove the cancer. With the amazing response to treatment the hope was that I could have surgery take out the rest, but this has now thrown that into question.

I have a tentative appointment with a surgeon at UCLA next week, but awaiting insurance approval on that to get it officially scheduled. They’ll have a multi-disciplinarian team take a look at my case and see what makes the most sense. Until then we keep our hope.

On the positive side, I did my 5th treatment on Wednesday, and the blood markers they test for in my blood were way down again. In fact, those seem to show in the “normal” levels now. Here is the breakdown of 1st (Oct), 2nd (Nov), and 3rd (Dec) tests, followed by normal ranges.

CA 19-9 – 1538, 105, 23 (with normal ranges being 0-47)

CEA – 29.9, 6.7, 1.1 (with normal ranges being 0-3.7)

So I fall back on my mantra from 6 years ago now:

I believe…

I am strong…

I am ready…

And I will win!

The ready portion was added exactly for things like this. I am ready to handle the bumps, the changes to plans, and whatever else I need to be ready for to win this fight. Expectations will often come back to bite us, so instead we must be ready for change. We don’t get to pick our paths all the time, but our reaction to the path we must take is what means the most.

I am going into 2021 with the strength of Hope behind me, and will do all that I can to be ready for the path I must follow.

Thank you TEAMjeff for your amazing support and Happy New Year to all!

Amazingly Grateful

While 2020 wasn’t the best of years in so many ways, I can’t help but to be so grateful for the way that it is ending. A scan that was about as good as we could have expected was a pretty good start. And then this past week with Trenton and his girlfriend Paige spending it with Kristine and I was the best present we could have asked for from them.

It was special, not because of any big events or gifts, but rather just the joy of spending time together and getting to see the smiles on their faces as they got to spend time together. It brought a happiness to my heart that came at such an amazing time.

I hope that each of you were able to enjoy a very Happy Holidays, and here’s to a 2021 of enjoying those little moments in our lives that mean so much when you stop to be grateful for them.

Scan results are in…

It is with tempered excitement that I reach out today. I received my scan report back, and it all looks pretty great to me. My doctor is out of town, so that’s where the tempered piece comes in, as I would like to see his reaction to get a feel of where we really stand. That said, it’s overall some pretty exciting news.

Back to the scan report, this is obviously done in medical language, so I am going to simplify and not try to be specific on location. With that said, here’s the breakdown of the report: 2 spots are visible but have significantly decreased in size, 4 spots have apparently “resolved” themselves, and they can’t seem to even visualize the stomach tumor through the CT scan. Pretty amazing overall, even if we consider that the stomach tumor has shrunk enough to be hidden in some way, it still means that it has significantly decreased in size.

It’s seems I have had a very positive response to this treatment and starting the process to kick this cancer’s butt. I’ll need to talk to my doctor to see what the plan is from here. It very likely means we will talk to surgeons to see if it is time to go in and remove what is left.

The slight issue that showed up on the scan seemed to be more fluid around the heart, but I went in to see my good friend Dr. Greg this morning and he said from the echo that my heart looks great. It seems I am still having some heart rate issues (running a little high), but otherwise good news on the echo this morning as well.

Knowing that this is just a step and I have a road ahead of me, I am strengthened to see this reaction and look forward to figuring out the next steps from here. I thank you all for your amazing support during this time, and ask that positive thoughts and prayers continue to flow my way as we fight to eliminate this thing as we move forward.

Now we celebrate having Kristine, Trenton and Paige all together for the week, and I plan to enjoy every moment. Happy Holidays to all!

TEAMjeff Strong!

2 days is much better than 2 weeks…

I’m officially discharged and home, and all things considered doing fantastic. Obviously some recovery still to go and keeping things slow to start, but I’m home! (And my welcome home buddy is by my side again 🙂

Today was smooth overall. They did an X-ray of the chest, all clear. The re-did an echocardiogram to ensure all looked okay, again all good. Last piece was the blood test and I was finally out of there. Only thing we are waiting for is the test results from the blood around the heart, but that takes a few days because of the process.

As it turns out, all the clots I had are now gone, so that’s a very positive response. Next thing up on the docket is my scan on Thursday. So until then I’ll be resting my heart at home and getting stronger and stronger. 💪🏼

Sorry for the worry, but we’re in a good place now and moving forward. Thanks to everyone for your incredible support!

#TEAMjeff

Not the end of the weekend I had planned…

Not a bad view to enjoy during my time here 😎

Well, this may come as a surprise to some and an update to others, but I’ve had quite the journey over the past couple days. Nothing changes in the end result, I will win, but this is obviously going to be a bit tougher than my first go-round with cancer.

Last week I was not getting the relief from treatment (or so I thought…) that I normally had been getting. In fact, it seemed to be getting worse on some levels. More nauseous was, fatigue, out of breath, pain, and a little more tightness and discomfort on breathing. All building a bit throughout the week.

Sunday started out decently, but seemed to take a turn quickly. A morning of getting some work done and then relaxing, quickly faded. Breathing got harder and I was fatigued just walking around the house. Laying down in bed felt a bit better, but I am learning enough that I told K I thought we might have to go in. Well, after attempting to take a bath and feeling like I was going to pass out after 5 seconds in there just from walking around, I was out, laying down in bed (which helped a lot), and told Kristine it was time to call an ambulance. And that was how it all started.

Turns out we are very glad we did. In bed I could talk, but getting out to go 5 feet to the chair/bed the paramedics brought in put me in major distress and as it turns out, not able to breathe fast enough to keep up with my heart rate.

So, now I’ll speed up the details a bit to keep it on the shorter side. Turns out I was in afib and my heart rate maxed out at around 300 until I could lay down. They gave me some drugs for it and got back to sinus rhythm pretty quickly in the ER, so that was good.

Then came figuring out what was going on and it turns out I had fluid (that’s what I heard originally) around my heart. After an echocardiogram the Doctors decided to drain the liquid. Now when I said I heard originally I don’t mean it was something different, it’s just I did not equate fluid around my heart to be 2.5L of blood. 😳 They did say it could be blood, but 2.5L is a lot of fluid.

In the end it all went smoothly. Now, that’s not to say that procedure is a comfortable one, but I could feel my auxiliary pain impacted and then fade right away. Nausea is gone thus far, which was horrible this week. And just feeling so much better.

Now, it’s really hard to know exactly where this came from from me since I have a few risk factors, but the current theory is that chemo irritated the heart a bit and then allowed blood in because of the blood thinner I was on for clots (somewhat common with cancer, the clots that is).

On to the good news though, because I had to go off of the blood thinner they needed to check my legs for clots again, and this time it was negative. No clots! 🤙🏼 Tomorrow we’ll do another echocardiogram to check on the recovery process of the procedure (all seems tender but good in terms of how I am feeling) and then it should be time to go home. 😁 Another sign my blood at least is responding to treatments.

A wild ride without a doubt, but as I have said from the beginning, I’m going to get done whatever it takes to beat this thing and all it can throw at me in the process.

It’s those times we are not just tested, but tested over and over, that we must decide how badly we want it. In my case, my Hope will never fade, and as long as I have Hope nothing will stop me!

TEAMjeff!