Tuesday, November 13, 2012

When Death Has A Face. Your Own.

OK, so the headline may be a bit ghoulish. But it describes the threat we face when we hear the word "cancer".

I have a family member who is in really bad shape, fighting for his life while battling this nasty, ugly and unforgiving disease. (I'm praying for you, Dan). The thoughts running through his head are hard to imagine for those on the other side, watching what cancer is doing to his mind, body and spirit. It's the main reason I started this blog over 4 years ago, to help shed light on the view from the cancer patient.

When I was diagnosed with head & neck cancer, my Wife made me promise that I would talk to her about what I was feeling and thinking. That's an extremely hard promise to keep, for many reasons. The pain and fear that comes over someone when you tell them how bad you really feel––no energy, fighting against giving up because this shit is hard and the feeling of losing control of your bodily functions and your mind––is hard to see and deal with when you're fighting. So I was judicious in what I told her and the family. And I kept telling everyone who would listen, "I'm going to be fine. I'm not ready to go. I'm going to kick cancer right between the balls and take it down." I did this just as much for myself, as for them. Why? Because I needed to hear it out loud, to motivate myself, for the people that love me, care for me. And I felt a tremendous obligation to stay alive.

I have written before there were more than a few occasions I didn't know if I would make it to the next morning light. I would stay up––usually in my bathroom trying not to throw up any more and/or trying to stay off the toilet––until the sun started to do it's thing. It was as if death was "teasing me", trying to get me to join. Strangely, I wasn't afraid––it made me more determined. I didn't want death to win. And I did look like death warmed over. Now for all of you who believe in God and/or life thereafter, this is not a denouncement––it's the human side of life that we only know all too well. And having "seen" death, it's what I felt.

And it was my face I had to face, every day.

Friday, October 5, 2012

What Am I Fighting For?

I don't know if this happens to any other cancer survivor. But after being given the positive thumbs up for 5 years of remission and the tears of joy, I found myself in an odd position/feeling: now what?

So I take personal inventory. Do I feel stronger? Check. Do I feel like a huge burden has been lifted? Sort of a check (I'll get to that). Do I stop doing what I've been doing? Uh, I don't know. My focus has been my health both physically and mentally for 5 years, fighting, hurting, recovering, masking the side effects (some which will live forever with me) and trying to take it one day at a time. Because I had a "cause". I had a purpose––to live. I even have a blog. And as you can tell by the length of time between posts, I've been struggling with this feeling and didn't think it was worthy of the space.

And that was stupid. I do have more to say. (For those who know me, I know that comes as a shocker, insert sarcasm here). And I still need the help of others. cancer is always lurking, like a shadow from a dimly lit alley. I have to watch my time in the sun, as skin cancer is always at the surface. Which is why the "burden" hasn't been totally lifted. I also have been able to decipher who my friends and friendly colleagues are through these last 5 years. That has been humbling and eye-opening at the same time and I'm not going to try to understand it completely. It is what it is.

I'm sure I'll figure something else out. I'm still supporting others who are going through cancer and donating time and money to the effort to find a cure. I'll keep writing, even if it's only for me and my well-being.

Yeah, that will work.

Wednesday, August 29, 2012

Hard To Believe

I have been putting off writing this post until I told my family.

No, not bad news. The best news. Ever. On August 23––which also happens to by my youngest Son's birthday––I had an appointment with my ENT, Dr. Patty Lee. Dr. Lee is my last stop before my annual CT scan, with contrast. A procedure that messes up my body completely and one that I don't look forward to at all. And since it has now been five years since I was diagnosed with head & neck cancer, this was a biggie. Could the 5 year remission landmark be that close? What if they find something? Am I strong enough––physically and mentally––to handle cancer if it is there?

My appointment was at 7:30am. And since Teresa was in Los Angeles, I was going alone. I also was alone at the pathologist when I found out I had cancer––this was starting to feel somewhat familiar so of course my mind started moving like a computer operating system. Too much data, too many windows open, too much distracting me from just concentrating on asking the right questions and see what my future may hold beyond today. And of course, I waited. And waited and waited.

As I sat in the exam chair, I thought of the time five years ago, with Teresa and my Dad sitting in the two chairs to my right. This was the appointment to tell me what my options were for treatment. And some other stuff that is now a blur. I thought about what would I do if I had to get that CT scan. And then thought "what if I am alright?" Yeah, both a good and scary thought. Why scary? I had grown to depend on these people to help save my life. They are my support system. And Dr. Lee has always been a straight shooter with me––some don't like that but I want to know the truth, in plain English and what do I have to do to survive.

A knock on the door happens and in walks Dr. Lee. She has my chart and starts talking to me about my unexpected scan in March. "What happened, why did you get a scan?" I almost said, "what, it's not written down in that 10lb file of mine?" But it was early in the morning and I just said, "I wasn't feeling great and I wanted to be sure it wasn't something serious. It had been going on for 4-5 weeks." She looked in my throat for about 3-4 minutes. Checked my ear and asked about my hearing––one of the side effects of the radiation is I have some hearing loss in my right era. (And I think this is the first time I've publicly admitted that). She then looks over the chart again, with special attention to the scan results. "You don't have to see me anymore." What? "Everything looks great. You're taking great care of your mouth and teeth. You hopefully won't ever have to see me again." I'm still in a little bit of shock. I AM cancer FREE and have reached the 5 year remission mark.

I still can't believe it.

Thursday, August 16, 2012

Celebrating A King's Life

Today marks the 35th Anniversary of the death of Elvis Presley, arguably one of the world's greatest entertainers ever.

My Mother was the biggest Elvis fan I have ever known. Since her passing in October, 2011, every time I see or hear Elvis it makes me think of her. So here's to Elvis and Mary Grace.

I hope you find each other in heaven. 

Monday, July 23, 2012


I posted this message below on Facebook last week. I was surprised by the heartfelt reactions so I'm posting it here, as written on July 20, 2012. Only thing else to say, is we never know when we'll see the people we love again, as life has a funny way of letting you know you're not in control of soooo many things.

Today in 1939, David Robert Johnston was given from God to Josephine and David Johnston––my Grandparents. My Father is an amazing person. I have learned from him to accept people for who they are. To embrace the differences in all of us. To express my love towards those who I care for the most. To share the things I have learned with others––if they are willing. To never stop learning myself. To embrace my faults. To be proud of my Hispanic heritage. To admit when I am wrong. To survive cancer. To allow my children to carve their own path and make mistakes along the way––but be there when they need it most. I learned to laugh from Dad. To love music. To look at things from a different perspective. To live life one day at a time. To treat everyone with respect. To fight for what I believe in as long as it doesn't come at the expense of others. To love sports and all the good that it teaches you. To appreciate the beauty and wonder of nature. My Dad will not read this, as he does not "Facebook". But it will live on in "digital history". So those who do read this will know that I am the man I am today because of his love, guidance, patience and perspective. Love you, Dad. So glad you're still here. Happy Birthday.

Friday, July 13, 2012

Back In The Scan

My annual "cancer Doctor tour" is about 2/3 of the way complete. It should have been over by now but I've been thrown a curve ball or two in the process.

During my annual physical, my Doc ordered a CT Scan and x-ray to see why I've been coughing more than usual the last two months. I had a little virus and cough in early May. It hasn't gone away completely, so the Doc ordered the tests. So now I'll get two scans this go around––the next one is the CT Scan with contrast which always messes with my head & body––because I need more radiation, right?

As I was being shoved into a tube for the scan, I did my usual meditation to relax and ignore the tube. Everything was cool until I got fully into the machine and it started up. The noise from the machine sounded just like it did when I went through 7 weeks of radiation. Being the human that I am, it broke my concentration and I felt my heart skip. Too similar. Too real. So unexpected.

Now it lasted all of 3-4 minutes. Radiation was about 20-30 minutes, depending on where I was in the stage of treatment. So I used that to keep me from rising up out of the slab and running out of the building. That would have been quite funny since I was half-naked and quite unnecessary. And I will have the "full monty" scan very soon.

Not looking forward to that one.

Wednesday, June 13, 2012

An Angel Amongst My Friends

Normally, I don't use this forum to promote or solicit raising money––unless it's something that hits close to home. As you can see by this link, http://bit.ly/HV28fG, this is about saving lives and continuing to build the end of the road for cancer.

Check out Erin's message and story. She's full of life, energy, compassion and is putting it to the best use of all––helping others.

Thank you, Erin, for being an angel.

Tuesday, May 29, 2012

Forget About It?

I read an article today about Kylie Minogue, Pop Star and cancer Survivor and you can find the entire article here http://aol.it/L22wwA There was one thought that stood out to me: "Over time, people have tendency to forget about it. Not me. A day does not go by without me thinking about it. Just looking in the mirror is enough––the scars are moral and physical."

Ms. Minogue is 7 years in remission. I'm on my "tour" of yearly check-ups––already went to my Oncologist––in what I hope will be the last round. I'm praying for 5 years cancer free (well, except for the skin cancer, that is). Yes, there were a few days I didn't think it was possible. But having a great mental attitude is KEY in fighting cancer. Not the idealist attitude or faking myself into thinking I'm going to beat cancer but true resolve, hope and fight to see what the day has to offer. No matter how good or bad the day turns out.

I know what she's talking about––those mirrors can be brutal and not in the "who's-the-fairest-of-them-all" way because that's NOT reality. And on my visit to Dr. Felice––my Oncologist––we talked about appearances. He said something to me that was really comforting in a strange way. He said, "you're almost 5 years from the cancer. You look great. People would never know you had cancer so recently. And that's good and bad. Good, because you are alive and cancer free. Bad, because you have long-lasting side effects that people can't see and you know how limiting they can be." How true. And something you do not want to admit when you're working and trying to stay ahead of the game.

I've posted before about my friend Matt, a cancer survivor who has been in remission for almost 20 years, who told me I'll get to the point where I don't think about cancer every day. And he was right, I don't think about it every day.

But just like Kylie Minouge, I won't TOTALLY forget about it.

Thursday, May 10, 2012

Keeping It Together.

It's been a long month since my last post. I have to admit it's not been a lack of thoughts/experiences/stories to tell. Just the opposite.

My Mother's birthday was April 26. I didn't do too well the days leading up to her birthday––my Mom passed away in October of 2011––and with Mother's Day looming, I'm thinking about her even more.

I lost one of my best suddenly two weeks ago. Too young and full of life to go but he did. I still haven't come to grips with his passing. And with his birthday in less than a month, I'm sure I'll be thinking of Larry even more.

Work has been challenging, as time off seems impossible. I've already changed my vacation plans twice due to work. With 4 weeks of vacation––I negotiated that before I came on board––to take in the next 6+ months, I'm looking at losing some of that I'm sure. Not to mention the fact that I need to take days off for my cancer check-ups. Which, by the way, start today. And that's another mental process to add to the rest of the bullshit. Yeah, I'm not myself. I'm angry, frustrated, emotional and searching for answers to questions that have no answers.

Like I said, keeping it togther. One minute at a time.

Tuesday, April 3, 2012

Stopping For A Thank You

I've been contemplating shutting this blog down. But a few of you have told me "no."

So, for the very few who read my blog, I want to say THANK YOU. I feel privileged you take some time out of your busy life to read what I write.

And I'll keep writing.

Monday, April 2, 2012

April Fools

I was working through the day yesterday, in my yard with my Wife and oldest Grandson. It was April Fool's Day and the pranks were running through my head like a kid through a sprinkler on a hot summer day.

Then I had some of the morbidly funny thoughts I have from time-to-time as a result of surviving cancer (twice). I settled on a fantasy world created as I mowed the lawn, cut & pruned some trees and pulled enough weeds to make my arms feel like Popeye after he's downed his spinach. (For those of you born in the last 30 years, you can find more on Popeye here).

I thought, "what if this whole cancer thing was an April Fool's joke?" (Yes, a very bad and cruel joke at that. But like I said, my sense of humor was at an all-time morbid high). What if I was just part of an experiment? I mean, head & neck cancer ("you mean, throat cancer or brain cancer, right?" Wrong)? Caused by the HPV virus? In Men? Yeah, it was quite unusual in 2007, as up until then conversation was centered around cervical cancer and the PAP with HPV test for young females. (My Daughter went through this, so I have some knowledge, thank you very much). What if they looked at me and said, "well, he looks like he can handle this. Let's try to kill him while we keep him alive." We'll put a feeding tube into his stomach––and make him wait for 4 weeks to figure how it works since we've NEVER seen this kind of feeding tube in a patient––cut our part of his tongue, scrape his larynx, remove his tonsils, yank 4 teeth out of his head, give him chemo right out of clinical trials and 7 weeks of radiation (35 total) WHILE we're giving him chemo every Friday for the next 13 weeks and tell him he has to miss work for the next 6 months. Oh, and just when he's finished with all that, we'll give him skin cancer, cut it out of two places (15 and 10 stitches, respectively, and two cold "burns" to remove two other danger spots) and tell him to stay out of the sun as well as out of work.

Yeah, that would've been a helluva April's Fools joke.

I'm not laughing.

Tuesday, March 13, 2012

The Announcement

I'll never forget that day, November 7, 1991.

I was in my office at work when I got a call from a friend––Magic was going to announce he has AIDs. After I asked him what was the punchline, he told me this was the word on the street. We used to call it the grapevine. And the grapevine in LA is all about who knows who and "the real story you won't ever hear on the news."

I then got up from my desk to try to get rid of the shock. As I was walking down the hallway, a co-worker said to me, "did you hear? Magic has AIDS. He's going to have a press conference around Noon." This was taking place around 10-10:30am, West Coast time. We all gathered in front of the TV in our conference room, eerily silent as we waited like everyone else.

Fast forward 20 years. As I watched "The Announcement" on Sunday, I started to relive that moment. And then, as I listened to Magic talk about telling his Wife and Family, I broke down. Tears were running down my face and I must have looked terrible, as my Wife said, "are you OK? I know how much you love Magic." I turned to her and said, "what he just said about having to tell Cookie (Magic's Wife), I went through the exact thing. Feeling the same way. And I NEVER heard this part of his story before." This blog started almost 4 years ago because I had to share the reactions by other people in my life through the cancer diagnosis, treatments and seeing people for the first time since I had cancer. Magic went through the same thing, but on a much bigger and less private stage. But I knew exactly what he was going through. And how much he had to educate people that he had HIV, not AIDS, and how he and others after him would beat this and live longer than anyone expected.

Thank you, Earvin, for sharing such intimate details about your path. And thank you for your strength.

That is much bigger than The Announcement.

Monday, March 5, 2012

Looking Back In Order To Move Forward

I'm a big believer in milestones. Those moments that happen by design or just because you were in the right place at the right time––or wrong place at the wrong time, wrong place at the right time and right time at the wrong place. They count.

I was diagnosed last week benign fasciculation syndrome. While it sounds bad, it's actually better than I thought it would be––BFS is a "diagnosis of exclusion", which scares the hell outta anyone. Why? Because when the nasty letters start to appear on screen––ALS, MS, MD––it can increase the levels of BFS. What is really is, is STRESS. Anxiety. Fatigue. So because of a compromised autoimmune system due to cancer and those lovely treatments, stress becomes the silent attacker. And stress is where we are currently in the "preventative" arena of keeping cancer away in our bodies.

Thank you very fucking much, stress. You have done it again. Or should I say, I have done it to myself again. My life is always an adventure or misadventure away, so you would think I could handle anything. But my human side is showing. The last 6 months have been extra tough, watching my Mother die a slow and painful death, dealing with her fractured estate and having each of my children go through one painful experience after another. But hey, it could be worse, right? I've been to hell and back.

Time to let it go.

Monday, February 13, 2012

The Battle Of Today

As strange as this may sound, I'm a big Whitney Houston fan. Style, grace and an angelic voice that only God could have helped create.

The news of her passing came with extreme sorrow and disappointment––and fear. She was an addict. She was not unlike the millions of others who fight addiction every day. She was human. And that's where the so called " we are all created equal" truly does come to life. We can become powerless over something that is so terribly bad for us but make us feel so good. For some of us it's work (workaholic). It's food. It's a drug and/or alcohol that we can't live 24 hours without that very second.

I'm fearful because I believe that each and everyone of us is susceptible to giving in to the traps of excess, of the inability to manage and ultimately abuse ourselves at any moment that will change our lives forever in a negative fashion. I'm also acutely aware that a a cancer survivor, those moments become even more special and precious. The battle today is all that matters. I can "win" this moment, this hour, this day. It's not going to be easy but then, what is?

I have to thank my Father, for helping realizing the importance of taking care of yourself TODAY, one day at a time. Because of that, he is still alive today. For Whitney, she lost the battle and the war on Saturday. I have no idea how she passed or if they will find out exactly why she left this earth too soon. It wasn't what she did last week, last year or even the night before her tragic. It was this past Saturday that won. And we are all a bit worse off.

Today won again.

Monday, February 6, 2012

100,000 To 1

Everyone watches the Super Bowl––at least it seems that way. It's become one of the biggest "holidays" in American Culture.

Last year, SB XLV, I was in North Dallas with 100,000 of my not-so-closest-friends taking in the experience. I had always wanted to be at the game, remembering when LA (or Pasadena) would host the NFL's biggest show on earth. And last year was very special, not only getting great seats but also working while trying to enjoy the pre-game tailgating and getting the final shots we needed to finish the 25 day tour we took from Detroit to North Dallas. It was long. It was tiring. It was fun––for the most part.

This year for SB XLVI, it was just me and my Daughter watching the game. And she had just come back from New York so I knew a halftime departure was inevitable. But I loved having her there with me, as my Wife had just left for SoCal, 2 of my Sons were on the road driving to SoCal and somewhere near The Grand Canyon and my oldest Son was watching the game at his with his family. Normally, we would ALL be at my house having a great time. Especially after surviving cancer, these family get togethers are really important. But here I was, life taking each of us in different directions and sitting with my 3 dogs watching the game on my big screen. It was extremely different than last year, from one extreme to another. As I sat there all alone, I realized I was smiling. Smiling because I was thinking of all my family and how ironic it was that I was by myself on Super Sunday. I was by myself but not alone. I had my family in my heart.

And without 100,000+ others around me, I also knew I could go to the bathroom or get something to eat without waiting in line.

Thursday, January 26, 2012

Wins & Losses

I was reading the other day that Kyle Williams of the San Francisco 49ers had received death threats after his performance in the NFC Championship game. Kyle Williams is the Son of former Major Leaguer and current Chicago White Sox General Manager, Ken Williams––and Ken was the one who revealed this information about his Son.

All I could think about was, "really?"

No one understands what it is to be die-hard fan of your home team than I do. For me, sports kept me out of trouble––most of the time––and was my escape from a single-parent household, gangs and the awkwardness that each and everyone one of us goes through as we grow up. I learned to read the Sports page with my Father at 4 -years-old. I watched the the NBA Finals as a 7-year-old at my best friend's house as the Celtics beat the Lakers AGAIN and then had to endure the taunts and being berated by my friend's family because I was a Lakers fan––they were from Philly so why would they be rooting for the Celtics?––and ran out of their house screaming and with tears running down my face. I would walk from my house to Dodgers Stadium––a little over 4 miles––as much as I could to go watch the Dodgers play from age 12-15. My Mom would pick me up after the game, as the neighborhoods I walked through were rough enough during the day.

My point is this: life and death is not a sport. And your team's winning or losing should not control your emotions––especially if you are NOT PLAYING in "your team's" game. I really changed my emotional connection to my teams––and I'm a USC, Lakers, Dodgers fan that lives on the East Coast––once I had cancer. Oh I still care and get passionate. But if we really need an emotional connection that makes us feel good, I say try to tell someone you love them. Or give them a hug. Or a kiss. Or give them a call.
As long as you're not threatening anyone.

That's a win, every time.

Tuesday, January 17, 2012

cancer Barbie

I've been stuck. Since my Mother passed away, my mind has been taking twists and turns of which I've never seen. Finding my voice and inspiration has been lacking.

So this made me take to the keys––cancer Barbie. Now you can read an article here http://huff.to/AbYzax that tells the story of Mattel saying "they don't take suggestions from customers" for products. It's hidden in there, if not, then I'm an idiot. But my point is this: Really?

Since this story hit, Mattel has been doing some re-thinking on this subject, as the Social Media world had taken on this challenge. (Use this link for the Facebook page http://on.fb.me/zQsiX0). And I've been stewing on it. Why? As a cancer survivor, a cancer patient, a parent for crying out loud I can see no harm in creating a doll that looks like a child who has lost their hair to their treatments. People want to see people JUST LIKE THEM. It's a fact. I also experienced this firsthand: a child who was going through radiation treatment the same time I was.

I remember sitting in the waiting room, getting myself ready for another radiation treatment. It was early on, so I hadn't hit the "radiation wall"; that's when your body has fully absorbed the radiation (and I was in chemotherapy at the same time) and it starts to kick your ass. And I kept seeing this little boy, being wheeled in with his parents and thinking "how can I help this kid?" I smiled at him and his parents. Asked him and his parents how was his day. Tell him it's my turn" and give him a thumbs up. I didn't do this out in the open––in fact, I'm not even sure my Wife, Teresa knows––because he was "embarrassed to have lost his hair. And you know how kids can be" was the longest response/conversation I had with his parents.

I also grow my hair to 10+ inches so I can donate it to Locks of Love http://locksoflove.org. And while that's a long term commitment, it still doesn't seem like it's enough. So I'm spreading the word to "help" Mattel make the right decision. It's just a doll, right?