Author: Joel

I just want to give a HUGE thank you / a HUGE shout out to both Monique and my parents! The first couple to few months were so incredibly stressful and scary. I was such a mess at times – I think much of the time I put up a good front – at least I think I did. There is no way i could have made it through without their support! They came to just about every doctor appointment I had. Monique was my personal nurse, my chauffeur (I was not allowed to drive while on pain meds), she was my rock! This will be one of my shorter posts … but I will never be able to thank them enough for everything they did for me during what I believe will be one of the hardest times in my life. I LOVE YOU! THANK YOU!

This may be one of the harder posts to write … but maybe now that I have months of cancer under my belt, it will be easier. In the first 2-3 months since diagnosis, I was crying every day. Now mind you, I am a person that hardly ever cries. But staring with the night in the ER when I was in so much pain, I broke down and cried to Monique, wimpering to her, “I just want the pain to stop” … since then, I would say I cried just about every day for the first 2-3 months. And what was the number one thing that caused me to cry? When people asked me how my boys were doing. That was it! Just a simple question about my boys and I would cry. A very close second was to justask me how Mo was doing. Doing that would get the same effect. I felt quite conflicted. I was being told that so much of fighting cancer was to keep a good attitude and to stay positive. I would question myself, “does my crying give cancer the upper hand?” Am I letting me and my family down by crying? To a certain degree, I knew these to not be true, but when one has cancer, there is lots of time to question just about everything.’

Now that I am approaching the 6 month mark since my diagnosis, things have gotten much easier as far as keeping my emotions in check. The future still scares me, but it does not take over every waking thought like it once did. I am also currently beating cancer. Lesions (both) in my left lung are shrinking. The lesions in my back are shrinking. I will continue to strive for my goal of NED. NED = No Evidence of Disease. It is said that people in Stage 4 can not technically go in to remission. Even if all of our lesions are gone, the cancer did travel through the blood, so the cancer could still very well still exist in our blood. But NED is a great goal to have!

So I will continue to fight, day after day, everyday! I will do all I can to kick cancer’s ass! As I have said many times, I will beat cancer! I will do what I need to do to stay on this earth as long as possible!

 

Update from December 22, 2017 (Friday)

Sorry for not updating sooner. Not as much to report. I did start my treatment 2 weeks ago. As I had hoped to not be subject to any side effects, I am experiencing some: dry skin on my nose, brow and scalp. Mild rash on my face. Dry mouth and diarrhea. Nothing I can’t handle. But then to make things more of a challenge, I’ve been sick with a cough / loss of voice. So now I am on antibiotics for my cold in addition to my cancer pill and all of the vitamins I take. Ahh, good times! I have joined a lung cancer support group on Facebook this week. And then I also joined a EGFR support group on Facebook. EFGR is the type of mutation I tested for in my DNA markers, thus allowing me to be treated with Afatinib (one pill per day). Not sure if I shared this, but I am part of a couple of Clinical Trials. One is my taking the Afatinib, which I would be taking if I was not in the clinical trial. In the clinical trial, there is 2 groups; Afatinib only vs Afatinib and a 2nd drug given via IV (both drugs are FDA Approved drugs, just testing to see if the 2 drugs together work better than just the 1 by itself). The computer randomly picked me to the pill only group. So, I am doing the same treatment I would be doing if I was not part of the Clinical Trial. And because I am in the clinical trial, I get my meds for free, which is nice. Another benefit, say the 2 drugs together do work better, I can switch to that treatment as I am part of the Trial. In my support group, there is a person who is in the 2 drug bucket of this trial (doing the 2 drugs) and she just reported that her most recent scans did not show any cancer lesions. That was great to read! The second clinical trial I am in, every time they take blood, which these days is quite often, they take double the amount … they test and see if liquid biopsies can give them the info they need that they would normally need CT scans for. So doing this Clinical Trial seemed like a no brainer … helping pay it forward. So this update is a bit longer than expected (that is what she said). A term I have used quite often as of late … this is my “new normal.” Next update to come after Xmas… so Merry Christmas to everyone! Please cherish each and every day! Make sure your friends and family know how much you love them! It is crazy how in a heart beat your life can change! It’s crazy how fast you can get a new normal! I am so blessed / so fortunate / so lucky to have such great friends and family as part of my support circle. Thank you all. The messages, the texts, the meals, it is all so very appreciated! I am so emotional these days, you would be amazed how the smallest of gestures make me smile and sometimes even bring a tear to my eye (in a good way). Even as I type this, I start to tear up. Thank you everyone! I love you all! Thank you – thank you – thank you!!! And as always, F’Cancer!

December 10, 2017 (Sunday)

Update:
Nothing really major to report. Having a pretty chill weekend. Visited with some friends each day this weekend, which is nice. Then this afternoon, I realized that today is the 1 month anniversary of my learning I may have cancer. Given it has been one month today, I felt an update was in order. So … today is day 5 of my treatment. One big blue viagra-looking pill per day. No real side effects to date (no 4 hour erections). They said side effects could show up 10 – 14 days after starting … actually they could show up anytime, but so far no real side effects to report (which is nice). I have had some back soreness the past week or 2, and that has been improving as of late. In a couple of weeks, soreness should be completely gone and I should be able to resume full activity (I am currently instructed to not do certain exercise and no picking up things off of the floor). Earlier this week I asked my oncologist for what website(s) I can refer people to who might want to learn about my situation. I love her bluntness. Her response was “None of them. No website applies to your situation.” I have also learned that all lung cancer statistics are outdated, I think new statistics come at / around 2020 (I am not 100% sure on this). The medication I am on was not around a few years ago and new developments / medications are coming all of the time. Kind of a funny quote from my Nurse Practitioner, she told me this past week, “it’s a great time to have lung cancer with all of the developments that are happening.” Kind of a funny thing to say, but I know what she means. So, yep, that’s all I have for now. Definitely been a crazy month! Oh, and of course, F’Cancer!

November 29, 2017

Quarterback (Dr. Bazhenova) was in place. Found out I am EGFR. Now time to meet with Dr. Bazhenova and figure our my treatment. We had a few targeted therapies to choose from, but it seems that Afatinib was the best way to go. With that decision, I then had the choice to do a clinical trial. The clinical trial that I chose to do:

Study Title for Study Participants: Testing the Combination of afatinib and cetuximab compared to afatinib alone in newly diagnosed EGFR mutation positive, advanced stage non-small call lung cancer

So now I am to wait to her what bucket (“afatinib & cetuximab” vs. “afatinib only”) the computer randomly picks for me.

I was also asked to participate in another clinical trial. I don’t remember this one. But basically for this clinical trial, each time they do lab work (take blood), they just take a couple more vials of blood to test for this clinical trial. It is still the one needle, they just take a little bit of add’l blood. This one I figured was a no brainer. Basically my way of paying if forward / good kharma if you will.

So 2 clinical trials … just have to wait for which bucked in the first one … move forward to December 5, here is the update that I texted to the small circle of family & friends who knew of my situation:

December 5, 2017 (Tuesday)

Update:
Sorry for no update in a little while. not a whole lot to report. Had a bone scan yesterday. Came out great. Have Dr. Appts and they all go great! As far as the clinical trial, the computer picked me for pill only (Afatinib only). So basically I will have the same treatment as if I did not pick the clinical trial. Benefit of clinical trial, I don’t have to pay for the drug / Afatinib. I start tomorrow. Excited to get this going! In the meantime, working, going to the boy’s baseball / basketball games. Just living life. As always, thank you all for your love and support. Means more to me than you know. Thanks for everything. And of course…
F’Cancer!

Monday, November 27, that night I had an 8:45pm Brain MRI. My oncologist did not suspect the cancer had spread to my brain, but good to check just to make sure. I thought 8:45pm was a bit odd of a time to get a Brain MRI, but they wanted to get me in as soon as possible. No biggie, I can do that. But arriving at UCSD Thornton Hospital at 8:30pm … it was a bit eerie. Not many people walking around. not super well lit outside. Thornton Hospital is not very hospital-y, especially at night – just a single security guard behind a desk in the lobby. When they took me back, they left me in a room by myself for about 20 minutes. No cell phone, no one with me, just me and my thoughts. Given I was just recently diagnosed with cancer, alone with my thoughts is not where I wanted to be. They eventually brought me out to the MRI machine. I had an MRI in the hospital, so even though I can get a bit claustrophobic, no worries, just had an MRI not long ago and it was a breeze. Well, I came to find out my previous MRI was a breeze cause I was doped up on pain meds. This time, not so easy. But long story short … as much as I did not enjoy it, I got it done!

Which brings me to Tuesday, November 28 was quite the day. It was the last day of my radiation treatments. I went to get a hair cut that afternoon. While I was getting my haircut, I got a message from my nurse practitioner telling me that the Brain MRI came out great, no cancer in my brain. Even though I had zero concern that I had cancer in my brain, receiving this news hit me big time. I asked my hair dresser if I could go to the bathroom real quick. I walked in to the bathroom, closed the door and proceeded to cry. Man, that news hit me hard, but in a good way. Being so emotional lately … just needed a good cry. Dried my eyes and headed back to my haircut.

Then a couple of hours after my hair cut. I am sitting at home. I get a call from my nurse practitioner. I was not expecting a call from her, but when she calls, does not matter what I am doing – I am gonna answer that phone! She called to tell me she had “the best news!”. I asked her if she was gonna tell me that this whole thing has been a ruse and that I don’t have cancer. She replied “ok, I have the 2nd best news.” Of course my response to her was “you talked to Mo and Mo wants to have lots more sex with me.”. My nurse laughed and replied, “ok, the 3rd best news.” By now I am very intrigued, so I ask her what is the news. She responds by telling me that they have my DNA Markers back. She tells me that I am EGFR. She told me that this was the best possible news. She told me that she and my oncologist jumped up and down with excitement when they received this news. Tears instantly started to flow down my cheeks. I could not believe it. EGFR means that I can do a targeted therapy — that I would not have to do Chemotherapy! This was fantastic news. You may be wondering what does EGFR stand for? Epidermal Growth Factor Receptor. What does that mean … I don’t really care, it means no chemo! We made an appointment for me to come in the very next day to go over treatment options and to get things started. But the news was in, I have EGFR Exon 19 Deletion (Non-Small Cell Lung Cancer), this is what we were praying for — today was a VERY GOOD DAY!

The following is the text update I sent to the small group of family & friends who were aware of what was happening:

November 28, 2017 (Tuesday)

Update!
Best one to date!
Nurse called me tonight.
My DNA Marker is a match for apparently the treatment they most wanted me to get!
And with this news, NO CHEMO! I go to see my oncologist tomorrow – I believe to start treatment! As my nurse said, “this is the best news she could have called me with!” Thank you everyone for your thoughts and prayers. Please keep em’ coming! Today was a very good day!
F’Cancer!

Nov. 21, 2017 (Tuesday)

Update:

Crazy to think it was one week ago today that I got out of the hospital.

Not a whole lot to report, but here we go.

#1 – Good couple of days. I went to work for a few hours both today and yesterday. Feeling good, spirits have been really good.

#2 – Had my 7th Radiation Appt. today … these radiation  appointments have been a breeze. No side effects. I don’t believe they zap my energy. All in all, been really good.

SIDE NOTE:
Now something happened at my first Radiation appt. 1 week ago. They have a CD player in the room and they were playing Billy Joel’s greatest hits. Pressure by Bill Joel (a song from 1982) – I have not heard this song in decades. But something happened that day … this song just struck a cord with me. So now, since that day, Pressure by Billy Joel has become my rally song / my fight song if you will. I have made sure they played that song in every radiation treatment ever since. And sometimes, the song just pops in my head as the day progresses, and it definitely helps lift my spirits. Just figured I would share …

#3 – one week ago, I was on pain pills every 4 hours. Then a few days ago I went to every 6 hours. Today I have yet to have a pain pill, last one I took was at 8pm last night. I talked to my radiologist about this tonight. He said it was a great sign that I have gone from “every 4 hours” to not at all in one week. And with no pain pills, I will be allowed to drive again.

#4 – PET scan … still waiting for appt. for that – I just learned that it is apparently the insurance company slowing that down a bit, should get an update tomorrow.

#5 – Info on my DNA markers … talked to the Oncologist office today. Should get this info by end of next week. Fingers crossed

#6 –  Tomorrow is a bit of a busy day … 9:00am Radiation Appt. along with a meeting with my radiologist. Then at 3:30pm is a meeting with an Oncologist … just meeting with a 2nd Oncologist to make sure I am happy with my decision – nothing wrong with checking out 2 doctors.

Not sure when my next update will be as not a huge amount to report each day — but everyone have a fantastic Thanksgiving Holiday. Treasure your family and friends! So crazy how things can change so quickly. Enjoy every moment! Love those around you!

Thank you everyone for your love and support. And of course, F’ Cancer!