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 12th, 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!

The Intent of Kindness

This is something that has been on my mind recently as I find myself having a rough recovery this week and still not able to get back to that feeling good place of the process. I have to accept that, and I can’t force it. I have to learn that resting isn’t always this R&R that I picture by taking advantage of the time to get stuff done. Even in the hospital I found it weird when all the nurses found it strange that nurses were surprised I was doing work. Now it literally doing nothing at times, just to let the time pass. Not my strong suit, but I am learning.

So, in my time resting, there were periods of which I could think about writing, and this one came up a lot. The intent of kindness and how much that could do for you and the world overall.

Now, it’s a little different for me, but I felt it was a good comparison still. I don’t really go out these days, so I haven’t had any negative situations, but I know they are all around.

By asking each of you to focus on the intent of kindness, I’m asking you to think through what you say or have said. Whether it’s to your loved ones, people at work, or complete strangers. The idea being that we never know what other people are going through or how life has developed them, but we do have control over our actions and reactions.

I mentioned above that it’s different for me. Well it’s pretty clear everyone I’m around these days knows exactly what I am going through and their actions show it accordingly. Now, it is an odd feeling when I go out in public. While I’ve never been one to look for arguments or fights, it’s a bit strange to walk around thinking that no one knows what’s going on with me. My answer is always to become more empathetic myself, so I am prepared for any interaction.

What does that mean? To truly have the intent of kindness? I’m going to breeze past the easy times of when you are happy, loved ones all ready, and kindness just comes. When you need to check your true intention is your responses to being challenged. Let’s go with work first, have you ever be in a position of thinking three things, as a response? One probably the dream of venting, never the best. The second though is the dangerous one. The one you take time on, feel you got on of your important point across, but likely crossed the line by feeling and not writing. What you wrote could be just fine and not looked at as aggressive, no it’s the other, much more dangerous side of passive-aggressive. You think you snuck you point in a answer of the question. Now, you should always voice your thoughts/concerns, but the emotion must stay out of it. Then the third is that re-write where you take out the passive-aggressiveness, no hidden digs, and only address the subject at hand and not the people. Choose kindness and forget the rest.

Our relationships are even more important. Disagreements don’t have to become arguments, we make them that way by losing our kindness and instead focusing on the points we want to make over someone else. I’ve thought about this enough in the past and have to laugh at how stupid I have been at times. In times of disagreements now with K (not much recently, so I’ll refer to “normal” time more), when I stop to listen, I inevitably still get to the second stage first, the one where I want to make my point the most, prove that “I’m right”, or whatever the motivation is at the time. Unlike our early years of marriage, I almost always catch those, because they had no intent of kindness and love, and how could I put proving my point above that. So now I catch it, shake my head a bit, and answer in a way in which I share my feelings, but not trying to “win” with the ill intent of making the other person feel bad.

Work, loved ones, or general public, I wish more would take this intention of kindness as the focus in their interactions with people. Extra gestures and things are amazing, but not needed in my opinion. The first step is finding kindness yourself. Someone cuts you off in the crowded parking lot? Maybe they are picking stuff up for a sick loved one at home and rushed without even seeing you. It wasn’t their intent to hurt you, so why react that way.

For those looking from the negative, maybe he absolutely cut you off on purpose. His intent doesn’t have to be yours. Move on. In a relationship that doesn’t work, then don’t make it worse, move on with the intent of kindness to both of you.

You see, your intent for kindness will be there for you and then help others along the way. Giving kindness makes you shine. Some people have a long way to go in that way, but you getting lost in negativity with those people doesn’t help you at all! You may feel better for a bit, but that negativity will grow and bring more instances like that in which you feel a need to react, because you did before. It’s a vicious circle that only leaves you negative and not knowing exactly why.

This holiday season I suggest you give yourself the intention of kindness and see just how you feel after a month.

Thanks all and thank you as always TEAMjeff

Update – Round 4 of treatment

Well, I think the saying really goes about years, but in my case the days go slow and weeks really seem to fly by. I figured I was late once again to get a post up.

I’m thinking this blog might sound negative or I guess maybe just that in sharing I feel like I’m complaining or wanting sympathy. When in reality this last week hasn’t been bad, it’s been part of the process I need to take.

Jumping back, I have to say Thanksgiving week was pretty amazing. Trenton was home and brought his girlfriend, Paige, home as well. Yes, for those wondering, we did play it on the safer side, but still opened up our home. Given both are athletes and tested weekly, it was the travel we worried about most. But in the end, what an incredible few days of hanging out, and it made my heart smile to hear them laughing together.

Monday and Tuesday I more or less rested after a big week of 7 days over 5000 steps, a couple up near 10,000 (these are big for me these days). Then came Wednesday.

The day itself isn’t really an issue and this time I also had my sister in town. So treatment day ✅. Thursday isn’t much different, except it’s really annoying to be hooked up to the pump and trying to sleep. So really most of the time since my last post was good things, but then Friday came.

With Friday starts the impact. The cumulative effect of the chemo starting to take an toll on me. The fatigue, mixed with this general body ache (like a fever, without the fever), are incredibly annoying and what makes the days and nights go by so slowly. Then add the general nausea and it’s like torture by annoyance. Not bad enough to really be bad, but bad enough to impact everything.

Talk about a time for internal strength. Now I need to do it for things that are bothering me, but not bad enough to warrant big reactions from me. It’s a special form a water torture sometimes, but they aren’t getting a word of weakness from me. 😏

This is turning into a full week these days as well. Monday and Tuesday still a bit rough for sure, but at least moving in the right direction.

And now it’s Wednesday, which should be the start of my “good week”, but seemly a slightly slow start this week. Maybe having to do with some stress at work, furloughs, decreases in pay, and just a change to what we were able to do for the swimmers. Same as any other obstacle, we took it in stride and made new plans, but the tightness in my neck and back over the past few days tells me while I’m not dwelling my thoughts on the stress, it’s impacting me nonetheless.

And now we are back to today. Oh, another little stress piece was my scan, but for now I have a scan next Thursday, Dec 17th and we’ll see how that goes. (Oh goodie, another week of scanxiety now. That may have also added to stress. 🤷🏼‍♂️) So much to be optimistic about with the scan, but yet so much to be determined by it.

So, don’t get me wrong, this has not been my favorite week at all, but the post really wasn’t about being negative, as I don’t feel that way. I believe! I know I’ll get through this regardless of the journey I must take. I am strong! I know I can take anything thrown at me… bring it! I am Ready! Hope and grit not rattled by this one bit, not for a second. And I will win!

Sometimes it has to rain, so we can see growth in the future. I’m ready for any storm, and will be grateful when I am on the other side.

Thank you TEAMjeff