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On April 18, 2018, I finally got my first PET Scan. While I apparently have good insurance (so I am told), they have denied my getting a PET Scan on more than one occasion, stating that it is “not needed”. Up to this point, we just substituted with Bone Scans. But apparently there is info that a PET Scan will give us info that a Bone Scan will not. Jennifer (my NP), at least I think it was here … it was either her or Dr. Bazhenova, they talked to my insurance company and got them to approve it. I was excited, but not sure why. I had quite a few people ask me to let them know the results. The thing was, I was not sure if there would actually be anything to report. After all, this was my first PET Scan and there is no previous PET Scan to compare this one to. So as the day of the PET Scan progressed, no news came. Now up to this point, I have been very spoiled. Dr. Bazhenova or Jennifer almost always get back to me the same day of every other scan. It is still crazy to me that they get me results so fast … if the scan is in the morning, I get the results on the same day. If the scan is in the afternoon, they still sometimes get me results on same day, but sometimes it is the next morning. So by Friday, I messaged Jennifer & Dr. Bazhenova … that night (5:08pm), I got this MyChart message from Dr. Bazhenova:

Looks clear, Bone areas does not pick up PET contrasts, so no active tumor. I am happy with your PET.
Dr. Bazhenova

This sounds really great … but does this mean what I think it means … well, it looks good, I will just wait til my next appointment on Wed, after all, that is just 5 days away. Then on Sunday morning, I got this text from Jennifer:

Hi Joel! Sorry- I wasn’t able to get online until today. However ur PET scan looks great! The bones show sclerotic and treated lytic lesions with no evidence of any cancer activity – so this is good! and no new bone disease. Also confirms the left nodule in the lung has decreased. All is great! Enjoy ur guys Sunday and see you this week!

OK, this sounds even better … does it mean what I really think it means? After all, in the beginning, I was told I had somewhere between 6 & 8 lesions in my spine. Heck! the one larger lesion is the little bastard that caused me so much pain, led me to the hospital and thus getting my cancer diagnosis. Am I really reading this correctly? “No evidence of any cancer activity.” Well, I will be to the doctor on Wed, I will just get confirmation then. I am not going to spread this news too much just yet, I want to make sure 100% that I understand what they are telling me.

Wednesday morning comes (April 28, 2018), this appointment was with Jennifer only. Sometimes my appointment is with only Dr. Bazhenova, sometimes I get only Jennifer, and most of the time, I get them both. I don’t ever know who I will get until they walk into the examination room. And this is totally fine, I love them both. I really do have the best team! So we talk about all kinds of stuff cancer related, then I ask her to tell me what the PET Scan showed. I wanted to hear it. And yes, I did read this correctly. NO SIGN OF  CANCER ACTIVITY IN MY SPINE! YES, I AM YELLING! FUCK YA!!! I am actually typing this 10 days after the fact and I am still in shock! I have goose bumps on my arms as I type this. ZERO CANCER ACTIVITY in my spine!!! Sorry, I have to say it one more time, FUCK YA!!!!

So thanks to a good friend that has his own battle with cancer – he told me a while back about support groups in Facebook. Great tip! I am currently in 3 Facebook support groups. One for Lung Cancer and 2 that are more directed to EGFR. All are pretty darn good and they are private groups, which is great … meaning that my Facebook friends can’t see / don’t know that I am in these groups. This is crucial as I have not come out on Facebook with my situation. I like the EGFR ones more. The posts are less frequent (they don’t take over my Facebook wall) and they are more directed to my situation, having EGFR. The Lung Cancer support group has over 9,000 members while the 2 EGFR groups have much less (one has over 700 members and the other has over 400 members). The challenge here is some days my Facebook wall can be all “Cancer Posts”, thank goodness for the 30 day snooze in Facebook, I can easily take a break from these posts showing up on my wall. The other bummer with the Lung Cancer Support Group, having so many members, there are SOO MANY posts about people “Earning their wings”. This can take its toll on me, heck, this can take a toll on any cancer survivor (I think I prefer “cancer warrior” over “cancer survivor”). I yearn for positivity, good vibes, good posts, good news … too much death is not good for one’s keeping a positive attitude. Kinda funny, a couple of months ago, someone posted that there was just “too much death” being posted and this person while sympathetic was hoping for more positive posts. I was 100% in agreement with this person and applauded their honesty … unfortunately, not everyone agreed … WOW! that was a lot of angry Cancer people commenting on that post. I understand where they were coming from, but I also understand / relate big time with the person that made the post. Another good / bad thing about these support groups, there are a lot of people out there that are not as educated as much as I believe they should be on their situation. There are also a lot of people out there (in my opinion) that don’t have top notch doctors (from what I can see). Seeing what a lot of people post, it makes me feel SO GREAT about my support team. I shared this tidbit with Jennifer (my Nurse Practitioner) and she was kind and told me that I am much more educated on my situation than many patients are. Whether that is true or if she was just being really nice to me – I would think someone with Cancer would want to be as educated as possible about their situation, after all, we are talking about surviving / beating Cancer, why would we not want to arm ourselves with as much information as possible. Anyway, that is my shtick on Support Groups. They are so great in providing lots of information & support, but too much “cancer” on my Facebook wall is not good – just continuing to try to find that perfect balance.

Probably the thing I talk most about is the side effects. This is what I dealing with the most. And quite frankly, this is probably what I bore people with the most. But taking one little blue pill a day … yep, just one little pill … one strong, wicked, cancer-fighting pill. But if given the choice of my cancer growing or dealing with side effects, I will choose side effects each and every time. What are my side effects? Well, here we go:

• Side effect #1, good ol’ diarrhea. Yep, diarrhea 2-3 times every morning and sometimes 1-2 times in the afternoon or evening. Once in a while I will get it in the midnight to 2am range. The bummer with this diarrhea, it is painful / uncomfortable. It sucks … but it is something I deal with. I take immodium and fiber supplements … but there is no getting around it, diarrhea is side effect #1. Another reason I say this is side effect #1, many times when people ask how I am doing, quite often I will mention the “dealing with my side effects” … most of the time, what I am referring to is the “my dealing with the diarrhea.”

• Side effect #2, my nose and cheeks are a bit rosy, have acne like bumps and on really fun days, I get some white heads. I am under strict instruction to not pop them, I just put on an ointment every day, and then a second ointment for the white heads.

• Scalp is a bit dry and mildly flaky … sometimes mildly itchy

• Sometimes I get a rash (painful rash) in either my arm pits and / or my groin. This is not all of the time, and when it happens, cortisone cream works fantastic!

• Dry mouth – I get this once in a while … I actually do not enjoy sparkling water anymore. I was not a big soda drinker, but I did enjoy a soda once in a while – nope, can’t do those. The carbonation gives me a burning feeling when I swallow.

• I am more prone to infections around my finger nails … this has just happened once on one finger and once on one toe. Finger nails getting brittle and skin cracking around the finger nails is apparently common, but not an issue for me luckily.

• Lucky to say, hair loss is not a side effect for the drug I am on. But my hair is a bit different. Not sure how to explain it, I think the tips of my hair is frayed … just feels a bit different and my leg hairs are affected as well, let hair seems just a bit shorter.

• Weight loss … ya, right! Unfortunately this is NOT one of my side effects. This is one that would have been nice, given I have been trying to lose weight … and then the first 3 months of my diagnosis, I was to not do much physical activity due to the one lesion in my back that was getting much too close to my spinal cord … weight loss has NOT been one of the side effects. I was at the oncologist a couple of months ago, she said to me “you have put on some weight, that is good, this tells me things are working.” I reply by telling her that I want to lose weight. She replies “then go to the gym, I cleared you for all physical activity.” … yep, that simple, I need to get to the gym more apparently. : )

• Recently I have found that I am more sensitive to spicy foods. I used to love spicy food, but not so much these days. Also, I still enjoy beer, but most of the time, especially with IPAs, I cannot finish a full beer. Half pints are my new favorite. An 8 ounce beer is perfect. Need to get more craft breweries to do half pints. I actually don’t drink nearly as much as I used to. I was not a big drinker to start … but I definitely drink a lot less now. I just don’t crave it as much!

• Energy levels are not what they used to be. I take more naps these days. Although, I often wonder, do I have less energy due to cancer? Or am I just listening to my body way more than I used to? I was talking to a buddy of mine about my loss of energy and he asked me this,”Are you sure it is the cancer that is zapping your energy? Or is it because you are getting old?” Touché!

• When I get hungry now … I definitely feel it. It is as if I can feel my blood sugar drop. Before I would just work through the hunger, or grab a diet coke and that would help suppress my appetite. But these days, I get hungry, I must eat!

• When I get tired, the first place I feel it is cramping in my lower legs, near my calf. This one has been odd to get used to. And if I get even more tired, the cramping will work its way to my upper legs.

I think this about covers it … good times with the side effects!

• UPDATE as of May 2018 … this one is new. Have not had this in the first 5-6 months … but now I have a large rash on my back … good times. It is not an attractive rash by any means … hoping this is a fluke occurrence and that it goes away soon.

By the way … this comic cracks me up so much!

 

This meme below cracks me up … texted to me by a good friend, makes me smile each time I look at it. So in my treatment process, I get a Contrast CT Scan every 8 weeks. So after my initial scan, I have had 2 Contrast CT Scans since … both scans showed that my cancer is shrinking … yes, shrinkage is good! My PET Scan showed shrinkage … and I should have another Contrast CT Scan coming up soon (later this month I thought) — funny, as I type this, I realized that I don’t have my next Contrast CT Scan in my calendar and I don’t find it on my upcoming appointments in MyChart. So good thing I am doing this post, I need to check with my team on when my next Contrast CT Scan is going to be. But for now, just remember, shrinkage is a really great thing!

Yep, a big part of my new normal …

• Blood draws every 4 weeks (it was every week in the beginning). Not a big deal. I don’t like watching blood come out of me, so I just look the other way. This is easy!

• Contrast CT Scans, Bone Scans, MRIs and PET Scans … these are not so much fun. Luckily Contrast CT Scans are the easiest and I do these the most. It is more of a donut than it is a tunnel. Bone Scans are also easy. The challenge with Bone Scans is the time it takes and the drinking lots of water. I show up, get injected with radioactive material, then go kill time for 3 hours. I usually go to lunch. During this time they want me to drink 8 glasses of water. I have a funny story about my first bone scan, I will share this story later in this post. PET Scans are ok, not quite a donut, but still better than the MRI tunnel. PET Scans, I get injected with radioactive material for this one too, but they have me sit in a room for 45 minutes after the injection and before the scan. And then my least favorite, MRI. This is a long tunnel, not good for my mild claustrophobia. My head is in a cage, loud noises and 45 minutes of just wanting it to be over. Oh, more fun facts on the scans. When I get a bone scan, they inform me that I am radioactive for 3 days following, so if I am to travel internationally, I will set off alarms. PET Scans I am radioactive, but apparently not for 3 days, just just tell me to no pick up babies or hug my kids for the first 6 hours after the scan. Crazy that they can inject us with radioactive material and all if fine.

• Xgeva Injections every 4 weeks. Given my cancer spread to my spine (Lung cancer likes to spread and find bone), I now get an Xgeva injection every 4 weeks. Xgeva is a bone harder. With my bones hardened, the cancer does not spread as easily. Couple of cool things about Xgeva, #1, Bone Hardener is Monique’s new indian name. The other cool thing, at least I thing it is cool, if I am to get dental work that involves a drill, I have to go off of Xgeva as the Xgeva has my bones so hard, it will break a dental drill. And yes, I did all of this bone hardening talk without nearly as many jokes as I thought I would. The other thing about Xgeva for me. My nurse, nor have the lab techs heard of this side effect with others. But always on the day of my Xgeva injection (which is usually around 10am or 11am), later that day, usually between 4pm and 5pm… I fall asleep and I fall in to a very deep sleep. In the beginning, I would sleep all night, now it causes me to fall in to a deep sleep for about 2 hours.

But yep, these blood draws, scans and injections are all part of my new normal.

Oh, and I referenced a funny story. So when I did my first Bone Scan. It was in Hillcrest, parking is so crazy down there, with 3 hours to kill, I decided to have lunch at PF Changes in Fashion Valley. I got a table for 1. I very rarely go to a sit-down restaurant by myself. I ordered a water with no ice and informed the waiter, I needed to drink 8 of these before the lunch is over. I had lunch and proceeded to drink my 8 glasses of water like instructed. On this day, I was not the brightest bulb in the box. As I started to drink glass #7, and mind you, I was very bloated at this point, I realized that I was drinking pint glasses of water. Yep, 16 ounces of water per glass. It hit me, they probably meant 8 ounce glasses of water. Yep, I was a bit of the over achiever on this one. I finished glass #7 and then asked for glass #8 in a to-go cup. I headed back to UCSD, I was way too full / way too bloated. Went to the bathroom before I left PF Changs. I went to the bathroom when I arrived at UCSD. I checked in for the scan and went to the bathroom again. When I checked in, I confirmed that they were talking about 8 ounce glasses, the guy behind the counter was like “ya, that is fine” … I told him what I did, we both laughed. We did the scan, at about 20 minutes, he had to stop, do something, then we had 10 minutes of scan left to do. I asked him during this break, ok to go to the bathroom again, He was fine with that. So next time … 64 ounces of water to drink … NOT 128 ounces. Boy, i will never make that mistake again. But water is good for me, right!?!

Oh, Funny Story #2 – At least I think it is funny. During one of my blood draws, they laid out 7 vials (see picture below)… normally it is just 3-4 vials. I was minorly freaked out. I asked her if 7 vials was correct. She said it was. I told her 7 was my record. She did not miss a beat, she then responded by telling me her record was __ (unfortunately now I don’t remember what her record was, but it was something like 25 or 28) … I just responded to her and said, well, my record is 7.

 

Info to get updated ….

In January 2018, I had the absolute best vacation ever … I will finish this post soon …

 

 

December 23, 2017 (Saturday)

Today is the day I was instructed to stop taking my targeted therapy (Afatinib). I started on 40mg on December 6. While I went a little while stoked on little to no side effects, just like my doctor told me, in that 11 – 14 day range, the side effects kicked in and they kicked in big time. Diarrhea was up to 6-8 times a day (I would later learn that this is worse than I thought). I had a rash / acne on my nose and cheeks. This acne was so bad on my nose that my nose was painful to the touch. My scalp got super-itchy. I would get rashes in my armpits and groin. I had pretty bad dry mouth. I try not to be one to complain. But this was getting unbearable. So on Dec. 23, I was advised to stop taking the Afatinib. I learned that we have to start at 40mg, but the reality is very few people can tolerate this. I went off of the drug for 6 days, then once the side effects subsided, they started me back up, but this time at 30mg. This turned out to be much, much better.

And then to make matters just a bit worse … during all of this, I had a bit of a cold with a cough. This cough had ZERO to do with Lung Cancer, trust me, I asked my Oncologist 3 separate times this question. But of course, being with those who know I have lung cancer and the fact I have a bit of a cough, I am sure those around me were thinking “sure, sure this cough has nothing to do with cancer.” – Eventually the cough went away — but it was not fun having to repeatedly explain to those around me that this cough had nothing to do with my Lung Cancer. Good times!

Oh, and as I sign out, just remember, F’Cancer!

November 22, 2017 (Wednesday)

Today was one of the biggest days in my battle against cancer! After meeting with Dr. Bessudo (oncologist) last Friday and not feeling great about him / not feeling great about his office & support staff. Today is the day I meet with another oncologist, Dr. Bazhenova. Through different circles looking for referrals, Dr. Bazhenova’s name repeatedly came up. We (me, Mo and my parents) met with Dr. Bazhenova at 3:30pm on the day before Thanksgiving. As I look back at this, probably not the best day / time to meet with someone, just hours before a 4-day weekend. But this meeting went FANTASTIC! Dr. Bazhenova was great! Her nurse practitioner, Jennifer, was FANTASTIC! The meeting was so much better than I could have ever hoped! While I stated that I would need the weekend to decide what I was to do. I knew walking out of their office that they were the ones for me. When we got to the parking lot, my mom, Bill and Mo all felt the same way. Such a blessing to have found them. It was making the Thanksgiving holiday that more special knowing we found our Quarterback!

As I have been asked many times, how did I find out I had cancer … Back on a Wednesday night, Nov. 8, 2017, I was coaching Logan’s 14U Thunder baseball team. I was actually feeling pretty darn good that night. I was throwing the ball a little harder, I was running around a bit more. I remember making a near shoe string catch in the outfield. I later joked that I would feel that tomorrow. Well, tomorrow came, it was Devon’s birthday. We had a great morning. Devon opened up some birthday gifts before school. I worked from home a bit. I then had to be to work by 11am for a going away lunch party for our HR person. It was during that lunch, my back started to hurt. I figured it was due to that catch the night before. The pain increased during the lunch. After the lunch, I went to my office to get some work done and I started to sweat from the pain. I decided to go home and lay down on my bed. I was thinking it was sore back from the catch, but the pain was worse than that. I changed in to shorts and laid down on the bed. Knowing the pain was pretty darn bad, I called my doctor to see if they could get me in. Fat chance of that, but at least I tried. So then I asked them where was the closest urgent care. They told me Vista and that it opened at 2pm. It being 1:35pm, I thought to myself, I could leave now and I would arrive just after they opened. But I decided to lay in bed a bit more. But as I did, I moved into a position that resulted in what I refer to as a lightning bolt of pain, it shot down my left leg and into my left foot. Now I am a bit freaked out. It hurt so bad … I laid there for a minute and then struggled to get on a t-shirt, find my flip flops and it was time to go to Urgent Care. Mo drove me. By the time we got there, the pain was unbelievable. I could not stand, I could not sit, I could not do anything to alleviate the pain. They got me in pretty quick, got me on some pain meds and ran some tests … urine, blood and CT Scan. They found nothing. They then started talking about my going home. I was not comfortable with this as they did not find out what the issue was and even though I was on pain meds (IV), I was still feeling the pain. They stated that they thought it might be a kidney stone that had passed OR it could be shingles without the rash yet OR something muscular. They gave me a prescription for pain meds and sent me home. Got home, took some advil, took a pain med and laid down for some rest. Mo took the boys to the movies for Devon’s birthday, I was totally find with this as Devon was excited for his birthday and all I was gonna do was lay down. I even thought about going to the movies, but decided to just lay down on the couch and get some sleep. I woke up a bit later, made some dinner and then got more sleep. But then at about 11pm, I woke in severe pain. It was not time yet to take another pain pill, but the pain was BAD … so I went ahead and took the pill. Things did not improve. By 1:30am, I went upstairs to tell Mo it was time to go to the ER. Boys did not have school the next day, so Mo told Logan we were going to the hospital and we left a note on the floor in Devon’s room so when he woke, it would tell him where we were. Got to the emergency room at Scripps Encinitas just after 2am. Pain was worse than ever. I had to wait in the waiting room for 45 minutes … I was in CRAZY PAIN. Again, could not sit, could not stand, could not lean, could not do anything to help alleviate the pain. Then we finally got called back. Again, urine & blood tests. But instead of a CT Scan, this time they did a Contrast CT Scan. The pain was insane, I remember at one point, while Mo was holding my hand, I just started to cry. The pain was so intense, I just wimpered “I need the pain to stop.” Eventually, they doped me up pretty good, so the pain became no longer an issue. Then a moment in time I will never forget. It was somewhere between 4 and 5am, the ER doctor came in and said something to the effect, “There is no easy way to tell you this, but I believe I found cancer.” WOW!!! Cancer?!?!?! Never did cancer ever enter the picture of what I thought was wrong.  They informed me we were gong to go get an MRI right away and that I already had a hospital room waiting for me. I later learned from the MRI, I had 2 small lesions in my left lung and about 6-8 small lesions in my spine. Actually, one of the lesions was larger than the rest. It was this lesion that started to infringe on my spinal cord, thus causing the pain that sent me to the ER.

I ended up in the hospital for 5 days. After the MRI, they had hoped to get me a biopsy on that same day (Friday), but we were not able to get it done. So then they tried to get it done on Saturday, but again, did not happen. So Monday morning they got me in for the biopsy. They were confident that it was lung cancer, but the biopsy would confirm. And it was a lesion in my spine that they biopsied. They were right, it is lung cancer. Now their #1 concern was that lesion that was causing the pain. They kept me in the hospital for the rest of the day on Monday, mainly for pain management. I was on Dilaudid through IV. I won’t lie, this drug is VERY AWESOME! Tuesday came, I was discharged at about 3:00pm and by 4:00pm I was seeing a radiologist in Vista for that one larger lesion. As the radiologist told me, if this lesion were to touch my spinal cord, we would be looking at paralysis. Thus the urgency / importance of going to a radiologist immediately after leaving the hospital. 10 sessions of radiation over the next 2 weeks. Next step, finding an Oncologist.

Recapping dates …

Nov. 10 – I learned I have cancer (or that dr. believes he found cancer).

Nov. 13 – I get biopsy to confirm that I have lung cancer

Nov. 14 – I “officially” learn / confirm that I have Stage 4 Lung Cancer.

Nov. 14 – I leave hospital and get my first of 10 radiation treatments.

Photos – my getting a biopsy and the scan showing the lesion that is coming way too close to my spinal cord.