Yes, I posted just a few days ago, but given that today is November 14, 2018 and it was November 14, 2017 which I was given my official diagnosis, Stage 4 Non-Small Cell Lung Cancer (Adenocarcinoma). Today is my official dx anniversary. I am not sure if it feels as if this year has gone by super fast? Or if it feels like it was forever ago I was diagnosed. All I know is I am kicking cancer’s ass and I plan on continuing to do so for a long, long time! What am I doing on this special day you might ask … well, I am at work currently and then tonight I coach Devon’s baseball team (our last practice of the season) … so nothing super special, but I do love coaching baseball, so it will be a fun night. But I want to take this moment to thank you for all of your love and support, means more to me than you will ever know. And as always … F’Cancer!
1 year … really?
So yesterday marked the 1 year anniversary of my hearing from an ER doctor, “I think we found cancer.” Crazy! Crazy to hear those words and crazy that yesterday was the 1 year anniversary of hearing those words. I had wanted to get this post out yesterday, just not enough time as we are on vacation in Palm Desert. A few things to share on this one year anniversary of hearing I have cancer.
#1 – November is National Lung Cancer Month. Some crazy / not fun statistics on Lung Cancer. One in 17 people will get Lung Cancer in their lifetime. And then this tidbit, this one was rather eerie to find given it is my 1 year anniversary: More than half of people with lung cancer die within one year of being diagnosed. Needless to say I am very happy to not be part of this statistic.
#2 – Had my CT Scan on Monday, Nov. 5 and then my Oncologist appointment on Wednesday, Nov. 7. All is doing great. Still just the one lesion left in my left lung. Size of that lesion is about 1.6 cm (about the size of a pencil eraser. And according to my Oncologist, that lesion is ghost-like, meaning it does not look much like an active lesion, it may just be scar tissue. Great to hear. Of course, I would love to know for sure if I am NED (No Evidence of Disease), but we have been down this road before. The risks outweigh the advantages of doing a biopsy in my lung or going to remove that lesion. As long as nothing is progressing, they are very happy!
#3 – I feel great … I actually feel better than I have in a long time. I have been doing the Keto diet now for 3 months. Lost 20 lbs from being on Keto (for those who have read my past posts, I did not lose any weight as a symptom of having cancer). I feel great, energy is great. side effects from the Afatinib are still there, but to a lesser degree than normal. When asked how I am doing by certain individuals, my response is often, “other than having cancer, I am doing great.”
#4 – I still have not shared my situation with people at work (other than a select few at the top) and I have not shared my situation with people on Facebook. I guess I am very fortunate to have this choice … for the most part, there have been many blessings since the crappy lung cancer diagnosis … I am in a number of online support groups and I feel I am very blessed / very fortunate that things are going as well as they are for me. I will take it. I will continue to try to further educate myself on lung cancer and I will continue to try to do the things that will continue to help my situation.
I think that about covers it … no much else to report. As my oncologist and my nurse practitioner joked about on Wednesday, I am pretty boring. When it comes to battling / living with lung cancer – I will take boring any day.
Thank you all for your support and as always, F’ Cancer!
p.s. if you want to subscribe to my blog, make sure you read this blog on a computer, on a computer, you will see the option to subscribe to my blog post updates. Subscribing is not an option on a smart phone, you must subscribe from a computer.
Fuck you cancer!
I don’t even know where to begin … I am crying for the first time in many months. Back when I was first diagnosed, I cried every day. Now mind you, I am not one to cry. But today I just learned that one of my favorite employees at L+L has lost is battle to cancer. He was such a great person. Such a great energy around the office. He is in his early 30s. Way too young to have to have dealt with this bull shit! Pancreatic cancer is what he was battling. It was an up hill battle for him from the beginning, but he seemed to be in great spirits and he was optimistic that he would be returning to work at L+L. He will be so missed, not just by me, but by all that worked with him. He was truly a special person. I am tearing up again just writing this. I will miss you my friend. And to cancer, FUCK YOU!
Uneventful can be a good thing
So here we are, Monday, September 10 marks ten months since that dreadful day I first heard the word, “cancer” in regards to my health. I remember hearing that “I think we found cancer” statement like it was yesterday. Crazy that it has been 10 months … so very crazy! Every 4 weeks for the last 10 months, I visit the oncologist’s office at the UCSD Cancer Center. Every 8 weeks, I get a Contrast CT Scan. This past Monday (Sep. 10), I got yet another Contrast CT Scan to check on the status of my cancer. This time around, I did great with Scanxiety (anxiety that comes leading up to / around scan time). Actually, no scanxiety leading up to this scan. But later that same scan day, it hit me I had not heard from my Nurse Practitioner (NP) … and so many times before, they text me the same day to give me the good news on my scan. So of course, at about 7pm that day, I realized I had not heard anything … thus my mind starts racing. Trying to keep my mind from racing can be a challenge! I definitely don’t like the dark places my mind goes. Happy to report, Tuesday morning I heard from my NP and all is stable, which is good. Sure, I would love to hear that there was shrinkage, but my oncologist and my NP told me long ago, that getting news that my cancer is “stable” is good news in their eyes. I totally understand that, but that does not change the fact that I have very high aspirations of achieving NED (No Evidence of Disease). Then later on Tuesday, I saw my thyroid doctor, yep, I am hypo-thyroid too. My doctor is great. I got to share with him my latest and greatest since I only see him once a year, I had to inform him of my new normal in regards to my cancer. He was funny, acknowledging that compared to lung cancer, I am probably not so much concerned about my thyroid. I told him that unfortunately, yep, he is right. He asked about who my oncologist was, I told him Dr. Bazhenova. He was very familiar with her. Then he asked what I found to be a very interesting question, he asked how often I actually get to see her. He acknowledged how in demand she is / how big of a name in lung cancer she is. It felt good to hear this about my oncologist … especially since I told him I probably see her every 4 out of 5 appointments. I went on to say how great both she and her team are. I have said this before and I will say it again, I am so over the top stoked on how great of a team I have! So that brings us to today … yep, same routine: drive to UCSD Cancer Center, get blood draw, Xgeva injection, visit with Dr. Bazhenova, visit with my Clinical Trial person, pick up my Afatinib prescription for the next 4 weeks, fall behind on work as I am at the Cancer Center for about 2 to 2.5 hours … yep, pretty darn routine, pretty uneventful. But given the cancer is under control and it is not growing – I will take “uneventful” any day! So all good for the next 8 weeks! Yep, living 8 weeks at a time, my new normal. Thank you all who are subscribed to my blog. Have a great rest of the week and of course, as always … F’Cancer!
Stand up to cancer
So, not the most action-packed update … but some good things worth mentioning:
- Stand Up To Cancer is on TV tonight, I believe all of the major networks will be televising it. It is a good thing that this kind of awareness / fund raising is being done for cancer, so if you find yourself home chillin’ tonight, turn on the TV and check it out
- On Tuesday of last week, I met with my Nurse Practitioner, and we discussed in great detail my side effects. We changed the way I take some of my meds. Changed the schedule / dosage of the pills to help me with the going to the bathroom. As luck would have it, I am now going to the bathroom 1 – 2 times a day and not 3 – 7 times a day like it was … Having improved this side effect has helped me greatly on how I feel on a daily basis / it has had a great impact on my energy levels.
- As far as diet, tomorrow marks my 1 month on the Keto diet. I am doing Keto for 3 reasons: #1 some believe it helps in the fight against cancer. #2 I have a fatty liver and I have read that the Keto diet will help with that. And #3, I need to lose some lbs. Well, after almost a month, I am 10 lbs. lighter (I want / need to lose a whole bunch more) … and let’s hope the fatty liver and the cancer situation are both improving as well thanks to the Keto diet.
- My energy levels are much, much better … I attribute that to a combo of going to the bathroom a whole lot less and the Keto diet both … but it sure does feel good to be feeling better and having more energy! I am very, very grateful for that!
I think that is basically it for now. My next contrast CT scan is this Monday, September 10. Gonna try to keep the scanxiety to a minimum leading up to that. Hoping for more shrinkage in that last, remaining lesion in my left lung … fingers crossed!
That is it for now – have a great weekend! A new update to come next week. And of course, F’Cancer!
Who doesn’t like talking about poop?
I tend to be a rather open person … when hanging out with friends, we talk about what is going on in our lives. For me lately, it tends to be a lot of conversations about pooping. I don’t think I am one to complain. But I am one to share and be open (I hope I don’t come across as a complainer). And given that side effect #1 of this cancer fighting drug is diarrhea … although it is not quite diarrhea, but it is diarrhea-esque … and for simplicity’s sake, I often just refer to it as “diarrhea”. So on to why I am doing this post … Yesterday was one of those more difficult days … after 3x going to the bathroom in the morning, I was in a good amount of pain for a large part of the day. I gave my nurse the heads-up and they wanted to see me today to assess things and try to make this situation better. So after about an hour of talking about my pooping, we do have a plan. A 3-tier plan actually. We will try tier 1, see if that works. If not, we go to tier 2 and so on. While we will not make things 100%, this is a side effect of the drug after all, we can make my mornings / days much better according to my nurse practitioner. It was a good appointment and I always enjoy spending time with her. So here we go, attempting to make my trips to the bathroom less frequent and hopefully with that, less pain.
One of the highlights for me in this morning’s appointment, she did state that my cancer is a slow-growing cancer. That was GREAT to hear!
Other things / updates in my life:
1. I have started the Keto Diet. I have been doing this for about 3 weeks. My Oncologist / NP are fine with this, they don’t have any opinions for or against my doing this diet. I am doing this for 3 reasons … #1, help fighting the cancer, #2, I have a bit of a fatty liver and this should help with that. And #3, to lose some lbs. Thus far a feel better, have more energy and my clothes are starting to fit a bit differently … so far, so good.
2. Boys started back to school last week … so summer is officially over. It was a great summer & many great memories were made.
3. Cancer sucks … yes, an understatement. But it is crazy … I have several friends each battling cancer … each one a different form of cancer. What the Fuck? One never knows exactly what to say to a friend who has cancer, but I hope I can provide some support, some comfort … I hope I can help inspire these friends to fight a strong and good fight! I so want them (and me) to kick cancer’s ass! It is funny, I am fighting cancer, but I still don’t think it has hit me 100% that I truly do in fact “have cancer” … and I always seem to be so sad when I learn of a friend who has cancer (or any health problem) … but I don’t always make the connection that I too, have cancer. I am not sure I am doing the best part of conveying my feelings on this … all I know, there is TOO MUCH fucking cancer going on!
4. Now some sad news: I had a friend I met through one of my online support groups. We had a good bit in common. Both Stage 4 Lunch Cancer patients, both had 2 kids, both are young as far as lung cancer goes (she was 12 years younger than me), both are here in San Diego county and both go to UCSD for our treatment. She was not EGFR and she had to do chemo and other treatments that I have not done … so while we had a bunch in common, we also had our differences as far as lung cancer goes. We would FB messenger each other a decent bit, but then we did not communicate the last few months. I reached out to her, no response, I then learned that she lost her battle to cancer on August 8. As I type this, the hairs on my arm stand up and I am starting to tear up. She was such a sweetheart and she had such a positive outlook. So very sad she is gone. So sad for her husband and her 2 kids. Not much else to say other than: FUCK YOU CANCER!!!!
I am not sure how to follow #4 with what is going on in my life … other than I will continue to fight. I will continue to work to get this last lesion in my left lung to shrink to nothing. My goal is NED (No Evidence of Disease), Thank you to all of the support from family & friends! I am a strong and stubborn SOB … I will beat this. I am not fucking going anywhere!
F’Cancer!
Yes son, one day soon!
So last night, we had family dinner. As we were getting ready to sit down, I said to the the boys with some excitement “Guess What?”
Logan instantly responds with “You are cancer free?” Logan’s response totally caught me off guard and his response is SO MUCH BETTER than anything I could have possibly said … so to that, all I can say is, “Yes son, one day soon, that will be the answer to my Guess What?”
Scanxiety was a bit heightened this time around
So here we are … just over 8 months since I found out I have Cancer. Been having a great Summer, but at the same time, my Scanxiety (as they call it) was a bit elevated. While the support groups are great, there is a good bit of death in them. And my EGFR support groups are supposed to be better for me than just the generic ol’ Lung Cancer support group. But then I read about someone with EGFR who passed away at the 5 1/2 month mark. Then I read about someone passing away at the 6 month mark … Well Fuck! I am at the 8-9 month mark. So my mind starts racing. I had my Contrast CT Scan today, then I head to Kentucky on Thursday. But what if things don’t look good on my CT Scan. Can I still go to Kentucky? Then I start making a list of all of the things I HATE about Cancer, and oh trust me, there are a lot of things that suck about having Cancer! I may do the “Things I hate” post later on down the road. So I go to my Contrast CT Scan this morning at 7:20am, and no, I am not a morning person. So it kinda sucks getting up that early for a CT Scan, but with early morning scans, I often get the results that same day, so I have that going for me. Which brings us to right now – YAY! This post has good news. I got a text from my Nurse Practitioner today at about 3:30pm, the text reads:
Hey Joel! Your CT scans look great! Still decreasing in size to the left lung lesion and bones are stable 😉 really good news! I’ll see u tomorrow.
So all is good. My heightened Scanxiety was all for nothing. I am good for the next 8 weeks … yep, life of a Cancer Warrior … living live 8 weeks at a time (every 8 weeks is my Contrast CT Scan to monitor how things are going) … so until 8 weeks from now … Kicking Cancer’s Ass!
UPDATE as of August 1 …
I meant to do this update sooner, but it was a crazy couple of weeks. Came back from Solvang on Monday, July 16. Contrast CT Scan on Tuesday, July 17. Oncologist appointment on Wednesday, July 18. Then fly to Louisville, KY on Thursday, July 19 for Logan’s baseball tournament … So on to the update. Where a little while back, we were wondering if that one last lesion in my left lung was even cancerous as it had not changed size in over 16 weeks … well, not what little bugger shrunk again. So yes, it is cancerous … but the crazy news is … Nurse Practitioner was a bit shocked! At the 8-9 month mark, they don’t expect to see shrinkage … so the fact that this little bugger shrunk … VERY COOL NEWS! I am waiting for the numbers on the amount of shrinkage. Will not be a big number as the lesion itself is on the smaller side. But hey, shrinkage is shrinkage and some have said, size does not matter, but that there will put us in a whole different conversation … so until next time. F’Cancer!
No news is good news!
I have had several people reach out as I have not posted anything in a while … well, that would be because I basically have nothing to report, but since I am here typing, here is my latest:
A – Side effects are worse on some days than others. Kinda funny, while I was so happy that I was not experiencing the fingernails / cuticles bleeding / cracking / etc. About a month ago, both of my ring fingers started having issues. But happy to report these side effects have gotten much better.
B. The good ol’ D-Word continues to be a challenge some days. The last 2 days, 7x per day. This really sucks as it totally zaps my energy. But given the patterns I am trying to determine, I am hoping and believing that today will be a much better day.
C. I need to call tomorrow to schedule my next Contrast CT Scan … hoping they can get me in on July 17. I meet with my Oncologist on July 18. This is smack in between a couple of vacations. I get home from Alisal Ranch on July 16 and then fly to Louisville, KY for Logan’s baseball tournament, we leave for that on July 20. I should have more to report after this next Oncologist appt. … or then again, maybe I won’t.
D. A question I have been asked repeatedly, is are the results I have been experiencing as far as the Afatinib killing the cancer, is this what was expected by my team. This is my NP’s response:
Not a silly question. We expect the drug to work and it is working perfectly. You are responding exactly how we would want. If you were not responding then we would say its not as good, but since you are still doing so well on it – we are happy. There is no better than expected because we expect. That’s not to say this is not good, it is perfect. You are doing so well and we are so happy for it. Don’t short change yourself or let this make you feel disappointed, if the drug wasn’t working these past few months then it wouldn’t be as expected. You keep doing everything you are doing because its working, we couldn’t be more happy.
E. Good days vs. bad days … I mostly have good days. Every once in a while, I have days where I think about death … those are not fun days at all. I don’t believe we as humans are wired to think about the end. We are wired to believe we will always be around. Luckily, I have only gone to this dark place once over the past several months.
F. Summer is here … had a great trip with my family to San Juan Island, Washington. Soon off to the Alisal Ranch. Then off to Louisville, KY followed by Nashville. Just trying to have great times with my family. Making great memories! After all, isn’t that what it is all about?
G. Did I mention I hate Diarrhea? Ya, I did, ok, good. Cause I do.
Well, I think that covers it for now, I will try to make my next post more exciting. Thanks for checking in on me. Much love to you all! And of course, F’Cancer!
Can’t we just say NED and call it the day?
Today was a FANTASTIC day! I met with a physician’s assistant at UCSD. Dr. Bazhenova is speaking in Canada about lung cancer and Jennifer (my NP) is on vacation out of the country. The nice thing about UCSD, everyone I have met there has been so great! And today was no exception. Today was another day of great news! While there have been two lesions in my left lung … yesterday’s Contrast CT Scan now only shows one lesion. Yep, that is right, the other lesion shrunk down to nothing! Now here is where I wish things could be nice and black n’ white. The remaining lesion has not done anything in the last 16 weeks as far as changing size. It could be that this lesion is not cancerous. It could be scar tissue, it could be something else, there is the chance that this 1.3 cm lesion is NOT cancer. So of course, I want to find out if it is or not. I want to know if I am truly NED (NED = No Evidence of Disease). I want there to be celebrations, bells ringing, fireworks, high fives, everything that would come with the celebration of “NO CANCER!”. But here is where I will just have to live with the not knowing 100%. Options in finding out if this lesion is cancerous … They could biopsy it, but why stick a needle in my lung if not absolutely necessary. They could remove it … but again, why have lung surgery if not absolutely necessary. We could zap it with radiation, but what if somewhere down the road, I might need radiation in the same spot / same area, they would not be able to do radiation in an area that already had radiation. So in the end, none of these possible scenarios to find out if the final lesion left is actually cancer are a good idea. But FANTASTIC news … no cancer in my back, down to one one lesion in my left lung … and quite the possibility that this final lesion may not even be cancer! Now that makes today a very, very good day! Am I NED … quite possibly so!
Now, just to share my “needle issues” from yesterday & today: Regarding yesterday’s Contrast CT Scan, I just have to share the not so fun part of yesterday & today. I think I jinxed myself. As they were taking me back yesterday, the nurse asked me if I have had a Contrast CT Scan before … I made light of it, mentioned how I get these every 8 weeks and they are a piece of cake. Well, I spoke too soon. After a couple of scans without the contrast fluid, they then announced the Contrast fluid was about to be injected into my blood stream. They had set up an IV for this. Well, as the fluid was to be entering my blood stream, I felt a pain in my elbow. I had not experienced this kind of pain before during the injection. It turns out, my vein was not taking the fluid. So they had to remove the IV and try it again, this time in my other arm. That did not take either. Apparently I was a bit dehydrated. They brought in a new nurse, for her to try … nope, she poked my left arm, failed. She then poked my right arm, failed. So then they brought in nurse #3. This was getting frustrating, but at least nurse #3 was quite cute, so I had that going for me. But I was not happy about my getting poked by a needle a 5th time. She did a few things to prep my arm and in the end, apparently 5 times is a charm. The 5th one took. But then fast forward to today’s blood draw. After my arms were just a little bruised, the NP today, when she went to inject me for the blood draw, she did not succeed, so she had to get a 2nd nurse. I was thinking to myself, “what the hell is going on here?!?” Luckily the 2nd nurse succeeded on her first try. I am not afraid of needles, but I definitely don’t love them either … hopefully yesterday’s and today’s issues with the needles is a one time occurrence and this does not become a regular thing.
But back to the GREAT news … one lesion in my left lung … and possibly not even cancerous. Am I NED? I sure as heck would like to say I am … And with that I will end this post. Today was a FANTASTIC day! And as always, F’Cancer!
Contrast CT Scan time!
Blood draw and Xgeva Injection time!