A message from Johnny’s son: Lee Carter Pye
For those of you who do not know me, I am Johnny’s 33 year old 6’3 strapping lad of a son. I grew up in the SF Bay Area but for the last few years have lived in Liverpool, England, home of The Beatles, Liverpool Football Club, and the city where my dad was born and bred.
I have been back to visit for the last month or so and spent time with my dad. It has been bitter sweet. Great to see my dad, friends, and the city where I left my heart, but not under the best of circumstances. I’d like to share the ups and downs and paint a picture of the last few weeks, then a little reflection of my thoughts and time here. I say ‘little’, but I must say I tend to write a LOT, from the heart…
The past month has been a rollercoaster. I got here October 2nd, not long after my dad’s last chemo treatment. When I first saw him, he appeared to be his normal self, less 30 lbs and his abundance of energy that we all know so well. His energy, enthusiasm, and appetite were all depleted and he was not his normal witty and charming self.
We sat down for a delicious dinner just after I got to the Pye Residence. My dad could hardly stomach half his dinner and beer. I know deep down he was trying to be strong and not show his true colors. But since that first night I could clearly see his energy levels, strength, and appetite improving every day. I had to tell him more and more not to work so much or lift things.
You can’t tell Johnny Extreme what to do though. He’s the hardest worker I know, always thinking, always analyzing, always busy, in the office and at home. I think the hardest thing for him is having a huge list of things on his mind but not having the strength or energy in his mind or body. I did what I could to be his strength and let his genius mind delegate me, telling him off now and again at home and the store not to do anything except tell me what to do.
My dad’s store, Bentley’s Home Design, on Francisco Blvd, San Rafael (check it out hint hint) has recently been sold to very good people who have been very accommodating and understanding and I know will do my dad proud. Selling the store has taken a huge load off my dad’s shoulders, one less major thing to worry about. Definitely not what he planned or wanted to do. He still has stock in the store including carpets, rugs, etc., so he will continue to sell those through the same business.
Johnny Pye was doing better day by day. It was the Fleet Week Air Show the weekend of the 11th/12th and my dad’s spirits and energy was up! He jumped on the opportunity to go on a 60-foot yacht to watch the air show.
Things seemed more back to ‘normal’ but within the next day or so my dad got an infection in his chest port. His temperature was up to 104 degrees, his blood pressure dangerously low down to about 60/40, and next to zero white blood cell count. He was rushed into the ICU. The doctors and nurses took good care of him while administering meds and a blood transfusion. My dad was in a critical state. He kept fighting and within a day or two began to stabilize. He had hopes to leave within just a couple days.
Apart from the odd broken bones, I don’t even know if my dad has seen a hospital in his life up until this year. He doesn’t belong there and doesn’t want to be there. The doctors held him for close to a week just to monitor him and make sure his blood pressure was stable. Visiting was very limited and required gloves and a mask as my dad was very susceptible to infection.
Once he returned home his progress was quickly back to normal, eating more than ever, much more energy, and more himself. Again, I noticed the difference every day. It is still a volatile situation though. My dad has a series of home-administered injections every day at the moment, including bowl full of pills.
Michelle has been absolutely fantastic. The very organized, no B.S., feisty, petite little postage stamp makes sure Johnny gets his pills down him and stuffs him as much as possible. If he doesn’t like the food in front of him, she will gladly whip up something else. We’ve even got him on weight gainer protein shakes which he loves! He’ll be benching more than me in no time! Even mentioning setting up the Bowflex… yeah dad, you’ve been saying that for 15 years haha.
The past week my dad has bounced back stronger but it is still a very uncertain time. The next two weeks some major decisions have to be made. I’m not sure my dad can handle another full-on aggressive treatment again. It may have to be a combination of a light chemo treatment, local tumor removal, local radiation treatment, etc. A full scan within the next couple weeks will tell all. Ultimately it will be a balance of extending and maintaining a good quality of life.
There is no definitive answer. It seems to be a series of milestones we aim for… his birthday, seeing me, making it through the infection, next is making it through the next treatment or surgery depending what’s best, then Christmas, then into next spring, and hopefully beyond. No one really knows how long. My dad is a born and bred scouser so he is a fighter. He already bounced back even stronger after a big scare.
I’ve never had a major loss or known anyone close being diagnosed with a life threatening or life ending disease. I don’t quite know how to handle things, I don’t know what to say, I don’t know what to do. But over the past month I have learned that all my dad really needs and all that really matters is two words: be there. All he needs is that bit of love and support which gives him encouragement and lifts his spirits. Whether it’s a text message, email, or stopping by for 5 minutes to say hello, every little bit means a lot.
Things like losing touch or falling out are meaningless in times of health concerns. Nothing else matters. In times like these, one starts to realize who their true friends are, those who are there in support through thick and thin. But being there doesn’t have to mean buying dinner, bringing gifts, or even discussing the situation.
I hardly discussed what my dad’s thoughts were or what he wanted to do. I could tell all he needed was something positive. I found just being his son and simply being there for him was all that mattered. We cheered for the Giants in the World Series, talked about Liverpool soccer, NFL, how my work is going, how my life is in Liverpool, shared some photos from my dad’s rockstar days, helped him with a bit of work, talked about girls, etc. That’s all he needs. So if you don’t know what to do or say, don’t even worry about that. Just talk sports, crack jokes, share stories of the past, just be there.
I can't help but think back about all the good times I’ve had with my dad… camping trips, ski trip to Squaw with mom, knee-board wars, teaching me to be better than him at pool, going to the movies with quick Taco Bell stops, ordering me a plain hamburger... “I just want the bun and meat... it goes bun, meat, bun, that's it” haha. Those little things are what I miss. And what makes my dad so special to me. Sharing those moments and experiences. Just being my dad.
I have always admired and envied my dad’s witty charm, charisma, intellect, taste for the finer things in life, ambition, and work hard play hard ethic. No one earned a Johnny Extreme shirt more than him. I am grateful he has helped me become the man I am. I am grateful he has always showed me new doors. I am grateful he pushed me to challenge myself and grow. I am grateful for him, whether by his side or across the pond.
So I leave the U.S. with a bit of comfort and more optimism seeing my dad at the best I’ve seen him since I got here five weeks ago. I’m glad I got to spend time with my dad and try to be there for Michelle as well who has a lot on her shoulders. My dad has always stayed strong, hidden his emotions, and kept his thoughts to himself. But I know deep down he is proud of me, happy for me to visit for so long, and so thankful for all the love and support from all of you. I am so thankful for you dad, I love you.
A very special mention should go to Michelle. She has been there for my dad so much these past few months. I’m not sure he would’ve made it this long if it wasn’t for her. She has helped all the way along with my dad’s health, appointments, the business, housework, chef, and mom to two puppies and two kittens, all while still working a job of her own and staying strong and holding herself together for my dad. She has made things as easy as possible for my dad… the hardest part for my dad being told what to do hah. I have really become closer to Michelle the past few weeks and can say I am thankful she has been there for my dad and I am proud to call her family. Thank you Michelle. Know that I am always here for you too.
The gorgeous inside and out Kavie has also been a saving grace. As a nurse herself she has been there for support in every way for Michelle and my dad, advising what to expect, and just being the caring genuine person she is. I can’t thank you enough Kavie. You are an angel.
Lastly, I have realized over the last month that life is short. Hug those who mean lots to you, tell those close to you that you love them, and take nothing for granted. Any one of us at any time could get life changing news to oneself or someone close. There aren’t always answers but the least you can do is show you care and be there. Presence goes a long way to lifting spirits. Please keep the messages coming, they mean a lot to my dad. He would love to see everyone but a low energy, short visit, relaxed setting is best with no more than one or two people at a time. He needs his rest, it gives him energy and strength. Thank you all for your love and support, it means a lot.
Lee
%2Bcopy.jpeg "Lee Carter Pye - throwing the 1st Pitch at a Giant Game")
