To a degree, been to hell & back!

While I may be a bit dramatic here, to a degree, it does feel like I have been to hell & back. The brain radiation was pretty brutal. Heck, I LOST 2 days (fell asleep on a Friday mid-day and woke up Sunday evening). I had a Spinal Tap. I have had MRIs on my spine and brain. I have had my head shaved. I have started IT Chemotherapy. I am on steroids that cause me to eat, eat, eat … and causes my legs to be weak, weak, weak. I kinda feel that everything on the Cancer Menu … I have tried.

BUT … now the FANTASTIC news!!! The IT Chemo I am getting, it is super easy. The treatment lasts 15 minutes and is super easy / not intrusive / side effects are minimal (side effects are a nap that same day and a nap the very next day). My commute to UCSD La Jolla and back is 1.5 – 2 hours … and the actual treatment is 15 minutes. I lucked out there big time!

And now for the best news!!! They are not finding cancer in my fluids from the IT Chemotherapy. NOW… they are not saying the cancer does not exist, but they are saying that they are not finding any cancer. So we will continue to test for cancer and hopefully in the weeks to come, we will continue to NOT find any cancer. Then we can do the IT Chemo once a week instead of 2x per week. And eventually get treatments down to 1x per week & then down to zero times per week.

Come this Thursday … I will be making an appearance to L+L Printers San Diego. Up to this point, I have kept my life with cancer and my my work life very separate. Really, the main reason for this was just to give myself a place of not talking about cancer. I wanted my work to be a place where I could just do my work. Where I did not talk about my cancer throughout the day. Currently I am on a temporary leave of absence and I am sure my friends / co-workers are very much wanting to know the latest with me, so I will be visiting them on Thursday. I am a bit nervous about making this visit, but I think it will be a great thing to stop in and see everyone. I won’t be making a stop in at L+L Carlsbad, as Friday would be the day to do that, but Friday is my IT Chemo Day, so I will have to figure out a day to visit there down the road.

So much more I could be saying … so much more I could be sharing … but I think this is good for now. I am feeling great. I am doing great. And of course, gotta end this with “FUCK CANCER!”

Things just got a “bit more” real

OK, so the past 2-3 weeks went from a period of “waiting” to now, starting radiation on Monday (tomorrow). My team has been debating the last few weeks on SRS (targeted radiation) vs. overall radiation. Well, decision has been made. Overall radiation starting tomorrow. My case was presented to the Tumor Board on Friday. Yep, add Tumor Board to my resumé. So I have that going for me. There are plus’ and minus’ with both options of radiation. I am just happy to get this started. I will do radiation for 2 weeks, then after radiation, start a new Targeted Therapy. Basically it is similar to 22 months ago. Back in Nov. 2107, I had 10 sessions of radiation on my spine, then started Afatinib (my targeted therapy). This time around, 10 days of brain radiation followed by Tagrisso (my new targeted therapy). Yes, brain radiation does sound scary, but my Nurse Practitioner assures me it is NOT Scary. When the cancer spreads to the brain, they tell me that they KNOW what to do. So all good there. Sounds scary to the average person … but all is good for my team, so they tell me. And we do have a relationship where they do NOT blow smoke up my you know where. Also, much like 22 months ago, I am not to be driving. So that is a bit of a bummer. Driving = Freedom. And I feel my freedom has been stripped from me a little bit. But in no time … I will be back driving. I do have so much more to say. But Las night was Logan’s homecoming, so we took him and his friends to La Costa Resort for dinner / took pictures. Today is Devon’s baseball game, my ass’t coach is picking me up since I cannot drive. And then after the game, Oktoberfest here in San Elijo Hills (walking distance from my casa, which is nice) … so just trying to get some normalcy in for the weekend before my radiation tomorrow. Main side effect, I will be a bit tired / wiped out. Hopefully not too much — my radiation last time had minimal side effects … a boy can dream for minimal side effects this time around as well.

And to my amigos in Falcon Nation … sorry I had to miss camping this weekend. I truly missed it. Crazy when I left my house at 3:30pm on Friday, all was fine and by 4:00pm, everything changed for the weekend plus the following 2 weeks … “Pivoting” is something I am definitely striving to improve on!

SMHS HoCo 2019 – Logan and his group of friends
(Logan in black & red with sunglasses)

It’s just a bump in the road …

Well, the time has come … been a glorious 22.5 months … but the time has come. My fucking lung cancer has metastasized. This “M” word is a word that I can’t spell and I can’t pronounce. One would think after 22.5 months of living with cancer, that I would learn to say / spell this word … well, I can’t. I had to look it up on the intraweb just to include it in this blog post. Sorry – I digressed. Anyway, my cancer has spread. Not a whole lot to tell just yet. But pretty much I will go a somewhat similar route that I did 22.5 months ago. I will undergo some radiation and I will start a new targeted therapy. Word is this new targeted therapy I will be on, it has less side effects… oh, how I will miss the diarrhea “cha cha cha”. Like I said above, it is merely a bump in the road. I meet with my Oncologist and Nurse Practitioner this upcoming Monday afternoon. Then on Wednesday, I meet with my new Radiation Oncologist. I am told he is “The BEST” … so that is always good to hear. The best Jerry, the best!

How did I learn of this you ask … I have had a mild, dull, off an on headaches the last few weeks. This past sunday, the headache got a bit worse, so I reached out to my Lung Cancer team. I got in for a Brain MRI on Wed (2 days ago) … Brain MRIs are pretty DAMN NO FUN. And then on Thursday (yesterday) I got the call from my Nurse Practitioner. As far as my symptoms … the are quite mellow, which again, I think is a good thing.

So, I am rambling on a bit more than I thought I would. I have not told my boys as of yet … but not really much to tell them… it will be rather similar to 22.5 months ago. Radiation, new Targeted Therapy … only thing I am missing is the 5 day stay in the Chateau De Scripps Encinitas Hospital. I will learn much, much more come Wed … so give me a few days to process all of that info and then a new blog post to come.

As always … thank you all fro the love, for the support … and as always, FUCK CANCER!!!!

World lung cancer day

So today is World Lung Cancer Day … such a sad fact that most people have no clue what today is, yet Lung Cancer takes so, so many lives. I am plagiarizing here … ok, maybe not if I admit I copied and pasted, but here you go:

Today is World Lung Cancer Day. Why does it matter? Because this is arguably the most stigmatised cancer, the one that relentlessly invites the question, “Did you smoke?” – which really means “Is it your fault?” And empathy is all too often withheld unless the answer is no.

Well, as you all know, I am a never smoker. Yet I still got this horrible disease. Good news … all is going well other than some side effects of the medication I have to deal with …

I am gonna keep this short — but now you all know that August first is: World Lung Cancer Day!

And with that, I am out. Peace! Oh, almost forgot … F’Cancer!

Good bye to a dear friend

I am not really sure where to start this post as it will be a short one. But I lost a very dear friend yesterday to this disgusting disease. Sharon has been a very good friend since we were in 3rd grade together. I don’t think I have many friends that go back that far. She was one of the people that I shared my cancer situation early on … then not too long after, she was diagnosed with cancer. Her path and my path (in cancer) were very different. I have truly been so very blessed in my path – but she was having a much rougher path. I am not really sure what else to say, other than I am very sad. I know she was suffering a lot in her battle with cancer, so I guess it is good she is no longer suffering, but this still sucks! Sharon, you were such a positive force and you were loved by so many people. You will be very missed. And just to get this off my chest, FUCK YOU CANCER!!!

Does cancer have to pop in my head for every little thing?

Sorry that it has been a little while since my last post. But as I have stated before, no post = things are going great and I am living my life. Four weeks ago was my last scan. I did have a bit more scanxiety than normal as my back was twitching, some soreness & pain. Of course these feelings in my back were very a very similar location to the pain I had that originally let me to my diagnosis. Those pains & twitches started about one week before my scheduled contrast CT Scan. Well, it was only a week away, so I kept those fears to myself. Not until the day of the scan, I messaged my oncologist and nurse practitioner about the previous week and how today would be a good day to get my my scan results quicker than normal. And they did just that. I had my scan at 9am and got my results back by noon. All is great in my scans, I was worrying about nothing. So long story a bit longer, all is going great for me in regards to my cancer.

Which kinda leads me to my other thoughts / comments … and yes, I am going to possibly swear a bit more than normal on this than normal. But to state the obvious, having cancer Fucking Sucks!!! Right now I am having pretty bad elbow pain, I have no idea why the pain / no idea where the pain came from. So then you wonder, is it related to my cancer? I doubt it is … but these are the thoughts that run through one’s mind. Then a few weeks ago, I was not able to make it to Logan’s high school baseball game. I was listening to the game on Game Changer while drlving. He was having a great game and as I am driving, I start thinking about how long I might have to live. And then I think about my boys not having their dad around. So then I just start crying while driving … really? All I was doing was listening to my son’s baseball game. Totally sucks thinking about my mortality, I won’t say on a daily basis these days … but still, I am thinking about my mortality more than any one person should. Then, I still get questions from friends, who think because I am doing so well, that my cancer is cured or it is in remission. As much as I would love to tell these friends that they are right, unfortunately they are not. I will ALWAYS having cancer and unfortunately due to it being stage 4 (it went in to my blood stream), I will never be in remission. Now true, they are finding new treatments all of the time and their is that group in Israel that announced a cure for Cancer by the end of the year (one can only hope & dream) … but as it stands today, I will always have Fucking Cancer. I will always have my mortality on my mind. It really does suck having to think about these things (cancer & dying) as much as I do. And there are just too many very good people out there having the same / similar battles with cancer that I am having. I know it is cliché, but it is NOT fair. Totally sucks!

Oh, a tidbit I got at my oncologist appt. 4 weeks ago, apparently the average lifespan for Afatinib working. If you don’t remember, Afatinib is the targeted therapy I am on. One pill a day. It is not chemotherapy. It is not immunotherapy. It is called a targeted therapy. Well, back to the point, average lifespan for Afatinib working, is 10 months … I am up to about 18 months. So let’s keep beating this curve, let’s have Afatinib working for years … once it stops working, I will move on to another targeted therapy … that is how this cancer-thing works. I will go from medication to medication for the rest of my life. I gotta kick this cancer’s ass!

I think I had other thoughts and things to convey in this post … but as I am typing, I kinda forgot what the other things I was going to write about were. So maybe I will just end it with these thougths. Thank you everyone for the love and support. Thank you everyone for the thoughts and prayers. I will continue to kick cancer’s ass for many years to come! You all are such a great support team, thank you for that. And as always, but this time I am gonna change it up just a little bit … FUCK YOU CANCER!!!

Life is good! You know, despite the whole cancer thing and all!

Alrighty … it has been a good while since my last blog post. My apologies. I have had multiple friends ask me to update more frequently. But my not having posted in a while means that things are going great! It is so crazy to think that I am approaching the 16-month mark since my diagnosis, yet at the same time, I still fell so new at this whole cancer thing. February has been quite the month.

First, February 4th was World Cancer Day. A day that by far does not get enough attention. There is so much damn cancer in this world. There are times where it really does feel like so many people have cancer. And there are so many forms of cancer. World Cancer Day … check it out, https://www.worldcancerday.org/

Second, at the end of January, it hit the media that some scientists in Israel announced that a cure for cancer is possible within the year. How fantastic would that be … think about it, a CURE for cancer! Of course, the logical side of me thinks “but there are so many different cancers, how can this really be true?” Then at my very next Oncologist appointment, I asked Dr. B (my oncologist) what she thought of it. She is so blunt, she tells me as much as she would “love to be unemployed, a cure for cancer in a year? uh … no.” While I am not going to bank on this prediction to be true, there will be a little part of me that clings to that moving forward. Let’s do it! Let’s cure this fucking awful disease! There is not a whole lot of information to the article, but feel free to check it out. It was posted in multiple news sites, here is just one of them. http://www.foxla.com/news/scientists-expect-cure-for-cancer-in-1-year

3rd, what a ride it has been! Recently I was thinking about what Jennifer (my NP) said to me back in the beginning, shortly after my diagnosis. She told me that there would be days where I would forget I have cancer. At the time, I was like “ya, right!” But she was right. Things really are that good. I won’t say I go all day without thinking about my cancer, it is kind of hard given I start every day with taking my targeted therapy pill, but most of the day these days, I really don’t think about my cancer. It is very cool! When I do think about it, I think about why & how I am so lucky. How is it I am with Stage 4 Lung Cancer and I am able to keep it from 95% of the people at my work. I have been able to keep it from the Facebook world. To look at me, there really no visual signs that I have cancer. So how have I been able to do this / how have I been so lucky? Is it the Afatinib (my targeted therapy)? Is it the Cannabis drops (THC & CBD) I put under my tongue every night? Is it the changing my diet to Keto (no sugar and very low processed carbs)? Is it the other little things I am doing; alkaline water, less time in the office, listening to my body more, resting more, etc.? Or is it some culmination of all of the above? What ever it is, I am going to keep on doing it!

Last, I am pretty darn proud of this. With the clinical trial I am on, I get blood draws every 4 weeks. I learned that if I was not on the clinical trial, my blood draws would only be every 8 weeks. But the last couple of blood draws, the results have been THE BEST I have had in many years. So I ask my NP about my blood test results and she told me it means I am healthy. Of course, that seemed odd to hear. I am healthy? But I have cancer! She told me that with my being healthy / with my great blood test results, it means I am healthy; lesser chance of heart disease, stroke, diabetes, etc. She told me that if I was a cancer patient with not long to live, then the blood results would not matter so much. But I am doing great! So these blood test results are great news! Having changed my diet in August and trying to be healthier … looks to be paying off!

Well, I think that does it! There is my most recent blog post. I will do my best to post more frequently. Thank you everyone for your love, your support, your concern, your everything. It really does mean the world to me the support and love so many people have for me, I truly am blessed! Until the next blog post, thank you and of course, as always, F’Cancer!

Just what we wanted to hear over the holidays

You may have heard me say this before … I am living 8 weeks at a time. Things have been going great, you know, other than that whole having cancer thing. But side effects from the meds have been manageable. Holidays have been great. But then as we get closer to December 28, the day of my 8-week Contrast CT Scan, anxiety tends to rise. “Scanxiety” as many refer to it. While I was confident that the results of my CT scan would be good, there is always that “what if” that creeps in to my mind. So rather than drag this on, I will just get right to the point. After a 9am CT scan, at 1:09pm I get a MyChart message from my nurse practitioner. Yes, that fast I got the results … love that! I was fearful that I would have to go through the whole holiday weekend (4 days) with the “wondering what if” … but my team is awesome! So without further ado, here was the text I received:

Hi Joel, your CT scans look great- all unchanged which is great! Stable and we keep going as the drug continues to work. I will release the CT scan reports and we will see you next Wednesday. Hope you guys had a wonderful holiday and Happy New Year, Jenn

So with that great news … I am good for another 8 weeks. Happy Holidays to you all, and cheers to what I hope to be a fantastic 2019!

Things I am thankful for, the cancer edition

Last thanksgiving was just nine days after my official diagnosis. Things were a bit crazy. All of the doctor appointments and radiation treatments and the whole newness of my having cancer. But here we are, a year later. I am doing great. I feel great. I really do have so many things to be thankful for. I figured why not list them off here. I am sure I may forget a few things, so for that, I apologize. Let’s give this a shot. This list is not in any particular order, ok, the first few items are in order, but after that, not so much. Here we go.

1. Mo & the boys – Mo has been absolutely amazing, especially when I needed her most, back when this whole cancer thing was brand new. Mo was my nurse, my chauffeur, my personal assistant, she was my rock! She is still great, but when I really needed it, she really stepped up and was there for me. I will never be able to say thank you enough for that. As far as today … what can I say? I love Mo and the boys more than anything in this world. Everything I do, I do for them. They are my EVERYTHING! I love them more than anything!

2. My mommasita – in the beginning, she was at every doctor appointment. Even today, she still comes to an occasional oncologist appointment – means the world to me! Thanks mommasita!

3. Friends & family – So very grateful for all of your love, support and prayers. Please keep it coming. I don’t think I could have done this without you all. You all are the BEST!

4. Targeted therapy – I am not sure of the exact timeline, but I just recently read that 5 years ago targeted therapies did not exist. So very grateful that my DNA Markers (aka Mutations) turned out to be EGFR. So grateful that I am doing a targeted therapy (a pill a day) and not doing chemotherapy. Cancer really is becoming a manageable disease and not a death sentence!

5. UCSD Cancer Center, Dr. Bazhenova, Jennifer and the whole team – What can I say? I have the best team behind me and that is for sure something to be VERY grateful for.

6. Tight butts – Sure they drive me nuts, but they are so worth mentioning and they are something definitely to be grateful for.

7. My job – So grateful that I have a job that allows me to work from home when needed. Early on, my side effects were a big-time challenge. So grateful I was able to work from home when needed.

8. My Los Lobos & Falcon Nation family – Yep, been a part of this Indian Guides program going in to my 9th year. This program has been magical for me and my boys … started off just me and Logan. Then it was the 3 of us. And now it is just me and Devon. Yes, I called it Indian Guides – we are supposed to be calling it Adventure Guides, to be PC. But this is my blog and being PC is not my thing. And to me, it has always been and will always be Indian Guides.

9. My No Fear family – I LOVE watching my boys play baseball. Logan has been playing for No Fear for 2 years. The friendships we have made with the other No Fear families truly is special. I really to think of them as family. I so LOVE watching the tournaments. I can’t wait for the next one.

10. Baseball – Yep, like previously stated. I love watching my boys play baseball. I also love coaching my boys play baseball. I just completed my last season of coaching Logan, but I still have years ahead of me of coaching Devon. Absolutely love it!

11. Online support groups – While there are things I can’t stand about Facebook, there are some very cool things about Facebook. One of them is online support groups. These are private groups. While I have not shared my cancer with the Facebook world, I am a member in a few online support groups. They are great, lots of great info is shared. While so much on the internet is scary and outdated … and just plain ol’ wrong … it is nice to have these online support groups to go to for info and support.

12. Boobs – Yep, grateful for boobs. I should not have to explain any further.

13. Legalization of marijuana in California – THC & CBD drops every night under my tongue before I go to bed. It is believed that THC kills cancer … not 100% sure if that is true, but between my targeted therapy and my taking THC, things are working. And for that, I am 100% grateful!

I am sure I am forgetting some things I am grateful for. Today has been a great day. I have been writing this blog here and there throughout the day. Now it is after 11:00pm and I am ready do my cannabis drops and head to bed. So with that, Happy Thanksgiving to you all. Please be very thankful for all you have and make sure those around you know how much you love them. Life sure can be a crazy roller coaster ride. And at times, one has no idea what lies around the corner. Thank you for all of your love and support and prayers … and as always, F’ Cancer!