Being only 6, it was hard to define what I felt (at the time of diagnosis). I was scared, and felt alone..the first time I was left at the hospital overnight. There were many adults talking around me, pointing and crying. The biggest emotion I had was shock and fear about not understanding the situation I was in.
I was in the hospital for 3 weeks when I had my spleen out. And, due to a recurrence of Hodgkin’s, my treatments of chemotherapy and radiotherapy lasted, roughly, 2 years.
Of all the people that came and went, it was always the nurses who stood out. They were the first contacts, often through the whole process, and they were the last I saw as I left. They have been in and out of my journey since Day 1 and they were the most human element I have encountered. I also remember the initial doctors including the now legendary, Dr. Edwin Forman. He took the time to answer all of my questions, privately, as a child, and was the first doctor to declare me cured after my first 5 year window of remission had passed.
I have been asked, "How did you deal with your diagnosis?"
All of the above really. Counseling came in my adult life, just after the teen years. I feel that once ‘real life’ hit, I struggled with the daily routines of career and such. I could have/should have started counseling earlier in my teens at latest.
There were many signs of ADD, PTSD and other disorders such as depression at an early age. My parents weren’t sure what to do at these stages and treatment may not have been readily available. I learned to use Fantasy Feedback, if you will, to escape my day to day. Unfortunately, it became a preference to real life that I have dealt with all of my years.
At school, with medical notes and special privileges due to illness and over activity, I was treated different – almost segregated, thereby enhancing the feeling of being alone. Basically, I became a writer as an escape from those feelings I grew up with. To this day, I still deal with inner feelings with the made up worlds in my head that end up on written pages.
Today, I am a proud dad of an adopted Korean boy, and husband to a cancer survivor herself – Pam.
Although I was diagnosed with ADD, I am a college graduate and published author. Everything I have learned sort of came the hard way but the lessons are there for the taking.
As I approach my long term survival, I am dedicated to mind and body for whatever hurdles that may come my way, physically.
Like most survivors, I sometimes catch myself taking life for granted. However, there have been hurdles that
have caused me, more than once, to pause. There are late effects. Effects that I hope, going forward, can be helped through self preservation (exercise and diet) and medical science. As for my future, it is my mantra to say, I am ‘still here’.
There are physical and mental barriers that I attempt to conquer daily. Taking care of my body and mind are at the forefront of, mentally, being ‘healthy’. I’d quantify my biggest obstacle is trying not to worry about ‘what’s next’.
What would I tell to someone who was just diagnosed?
It’s your body and you are your own advocate. Many people are going to tell you how you will feel and words like “odds”, “chances” and “stages” will be thrown at you. You will be told a laundry list of side effects. You will be told what you can and cannot, or shouldn’t, do and how you may feel.
In the end, listen to yourself. When you are tired, rest. When you are happy, smile. When you want to cry, just cry. Control what you can and demand what you need to move forward. If you need to spell out CANCER to get a medical appointment, do it. If you don’t feel like smiling at any particular time, don’t fake it for the world.
It will take some getting used to, but in the end, you will find it both healthy for your body and for your peace of mind to naturally be whom you want/need to be. Don’t let anyone get in the way of you moving and breathing. The human body is a universal miracle and so are you.
If you could do one thing over, it would have been?
I have been through 2 bouts of Hodgkin’s Disease. Years later, I had a triple bypass because of the radiation. Years after that, I had to remove a cancerous liver tumor because of those same treatments. If I had to do one thing better, I would have been ultra-vigilant of what went into my body – diet and exercise being key. I don’t honestly know if any of my side effects would have been curtailed but I have learned to keep my body and mind ‘ready’ for the next hurdle – something I wasn’t prepared for after I grew into a long term survivor adult.