July 2011, was when my journey started.
On a fluke, my Urologist said we should do a lower abdominal CT scan. I had been getting up to go to the bathroom 3-4 times a night. Common for men my age, but none the less a bother. He later called me that afternoon and said “everything looks fine with your abdominal area, but the top of the scan caught something on your lower left lobe. Let’s get a scan of your chest”.
A week later I get CT scan of my chest. Dr. Melamud calls and says, “It could be cancer”. Pet scan confirmed it. Peninsula hospital was wonderful. Dr. Aziz Ahmad did the surgery. Removed the left lower lobe, and 19 lymph nodes. No chemo or radiation. Clean.
One year later while at Costco shopping, and a day earlier had a CT scan, Dr. Ahmad called and said it looked like the cancer was back. But this time it was a tumor on my Aorta.
A lot of crying ensued at Costco (I wonder what people were thinking).
Too close to my heart for surgery, so he recommended chemo and radiation. I said fine and made up my mind that would be the path to go.
Many people said get a second opinion, but my mind was made up. Just do it! Get it done!! Let’s get past this! We started scheduling the appointments. I got tattooed for the radiation and someone recommended an Oncologist at El Camino Hospital named Shane Dormandy. My wife and I met with Shane and we loved him. He was so convincing, that whatever doubts I had he extinguished.
But again people kept telling us to get a second opinion. And again, I just wanted to get it over with.
About a week before I was to start chemo and radiation, my wife and I were lying in bed watching TV, when a commercial came on for the Bonnie Addario Lung Foundation, but as a drummer, what caught my eye first was that it was Maroon 5 and a little 7 year old girl named Jill (if I remember right) and she had lung cancer. How can that be???? 7 years old??? Anyway, we wrote down the foundation info and my wife called the next morning. We had never heard of Bonnie Addario.
My wife spoke with Bonnie the following morning. When I got home from work, she said she wishes we would have known about Bonnie from the beginning of this journey.
She sent us to UCSF and try to get in with Dr. David Jablons. We started looking Dr. Jablons up on YouTube and he is a rock star. This is the guy we want. But, he was in China with his daughter and was still 3 weeks out from coming home.
In the meantime, my wife’s cousin knew someone at UCLA Med Center and had made an appointment for me in Los Angeles. I did not want to go, but knowing we couldn’t get into UCSF at this time, I was literally days from starting chemo and radiation, and her cousin made the appointment, we hesitantly went to UCLA. On the drive down I told my wife, “I don’t care what UCLA says, at this point I am going to go ahead with the chemo and radiation”.
At UCLA we met thoracic surgeon Dr. Lee. He reviewed my medical records, and calmly suggested that we remove the entire lung. WHAT?!?! Nobody ever said that!!!! How will I breathe??? I will never go back to work, or ever golf again, never play drums, my life, as I know it is over!!!! He talked about if I was to do radiation, the damage it would do would be irreversible.
Sorry, not an option. The drive home from Los Angeles was quiet and depressing. I was scheduled to start chemo and radiation in 3 days.
Then we got the call from UCSF. Dr. Jablons was still not back from China, but I could meet with Dr. Michael Mann. We took it.
We met Dr. Mann and the first question he asked was “I know you have gotten a few opinions, what were they”. I said “if you don’t mind, can you give me your opinion, and then I’ll tell you the other ones”. Well, he started giving us different options that were also some of our second opinions, but his last one was what he felt was the best option. Remove the whole lung! Again I said, “How will I breathe”? He said with your other lung. We do these all the time. They are very common.
Well, at this point I felt UCLA and UCSF both suggest the same surgery. It must be the way to go. I cancelled both my radiation and chemo treatments.
Monday, July 16, 2012 6:00 am, I walked into UCSF in San Francisco. The surgery went as planned, and from there I was brought into the ICU.
The day passed and the following morning nurses came in to get me up for my first walk. I could barely get out of bed. As I tried to walk, I could only shuffle my feet. What has happened to me??? I walked in here yesterday feeling completely healthy, and now one day later I could hardly walk?!
What have I done? I have ruined my life!! I will never go back to work, I will never golf or do any outside activities, I have completely f@#ked up my life! Why did I do this??? I was traumatized! As I struggled to walk around the ICU unit, I felt I had made a huge mistake, and there was no going back.
As the nurse brought me back to my room, I was trying to wrap my head around the fact (or I thought the fact) that my life would never be the same.
Life as I had known it the last 57 years was gone. I was absolutely devastated!
Well, with each passing day, my walks became a little easier, but I was running out of breath quickly. By Friday (July 20, 2012) I was on my way home. I was told I needed to walk as much as possible.
At first just walking from my car parked in the street to the front door of my house I struggled from “bottoming” out, which the best way I can describe this is if you were running and you stopped and were gasping for additional air, you would be able to breathe deeper and get the air you need. I could not. I tried to take in more oxygen, but I didn’t have any additional capacity.
So I walked, and walked, and walked some more… and you know what?
Six weeks later I was playing in a golf tournament. Playing my drums again.
Doing all my regular everyday things that I did prior to my surgery. Even had my “go back to work date”. Six Weeks Later!!
As Dr. Mann said, “The more you walk, your other lung will continue to grow and compensate for lack of the missing lung. My first CT scan confirmed the fact that my lung had grown significantly.
Now, 3 1/2 years later, the only thing that has changed out of my life is if I run I run out of breath. I was never a runner or even a jogger, so really nothing changed physically.
Of course plenty changed in my head.
One of my closest friends, Dan Nolan, who I had worked with for 30 years was diagnosed with cancer 5 years before me. He was devastated, mad and the negativity that he put out, we all understood. He had many treatments over a 3 year period. A few months before he passed away he told me something so very profound, but yet I couldn’t understand it.
He said, “I never thought I would say this, but cancer turned out to be a blessing and a gift in a very strange way”. WHAT THE HELL IS HE TALKING ABOUT??? Obviously, I could not understand this. He went on and talked about how people came out of the woodwork to support him. Friends, acquaintances, even people he did not know. He got cards from friends of friends. The Love and compassion he received was better medicine than any doctor could give.
Well, 5 years later it was now my turn, and I fully understood what he meant.
The kindness that comes from people is overwhelming.
People you know, people you don’t know. I received a Prayer Shawl from a woman that I had never met before. I wore it every time I did Chemo.
Cards, emails, dinners. You realize you are not alone in this journey. I know this may sound weird, but if I was granted one wish in my life, I don’t think I would have removed my cancer journey. I saw all the good that people have in them, and it opened my eyes on how I needed to step up and show much more compassion and understanding.
I will always remember one of the first phone calls I got after going back to work was from a man I knew from St. Roberts Church in San Bruno named John Marty. He said a friend of his was diagnosed with lung cancer, and would I mind talking to him. I said of course. I hung up the phone and I told my wife, “What can I possibly say to this person?” I can’t remember now if he called me or I called him, but I ended up talking with him and his wife.
Their names; Bill and Ruth Callahan, and they were just starting their journey.