A good friend of mine, whom I met in Japan, is a long term cancer patient. When I first got diagnosed, he was one of the 'first responders' and gave me some advice I should have listened immediately: You need to be your own advocate.
Recently, he sent out a reflective document on his ordeal (which makes mine look like a cut that needed a bandaid.) Honestly, aside from the word 'cancer' there's nothing about our experiences that are similar. His strength is incredible.
He's given his permission to share his thoughts here...His name is Jay.
Someone asked me recently what it was like to be a long term cancer patient. I thought about it for a moment and said that it is a complex answer but I could break it down into four basic areas; pain, courage, hope and faith. Since that conversation I have spent some time thinking more deeply about each of those elements of my journey. For after all, cancer is most certainly a journey.
v Pain
On the physical side there are oh so many delicious memories. Where to start? How about my skull cracked open. Shots at 4:00 am in my stomach. Blood work drawn by functional idiots. Did I mention having stereotactic frames screwed to my head? Hhhhmmm I must be missing something. Oh yes I forgot about loss of taste or more correctly everything tasting like metal. Rashes over ¾ of my body, drugs that make me gain weight like a chocoholic in Willie Wonka’s factory. And while these technically don’t fall into the pain category (unless we count the moron in MRI that keeps missing my vein with the fucking contrast) there are the tests; CT, MRI and PET (radioactive glucose, are you kidding me?) scans. The running joke at NEMC is that after one or two more MRIs I won’t have to worry about losing my keys or any other metal object.
On the mental home front it is often a rollercoaster. You start out with “why me” but move from that fairly quickly. It will come back every now and then depending on diagnosis and treatment. The other aspect of mental pain is trying to stay focused on your life while dealing with this condition. You try to cope with this through a variety of means. Some people visit a shrink. I go to our Rabbi. What an awesome man. He provides me so much perspective and is the perfect sounding board. My favorite moment was when I was talking to him about how I felt guilty about something I could not get done for the temple due to my chemo. I believe the conclusion he drew was that I was out of my mind (no pun intended) and that it was OK to ask for help. Smart man! My other approach is to use visualization techniques. I can sometimes be found in the gym performing a set of some weight exercise visualizing the weights as my cancer. “@#$%#$%@!#% Astrocytoma I am going to kick your ass now!” Hey, whatever works.
Spiritually I think we all start with one basic concept; how could god do this to me? Loss of faith even temporarily is incredibly painful. Then as the years go on and you find that your experience can be shared to help others you think maybe there is a plan here. I feel great about that part of it; it is the dying part that is really pissing me off. Seriously, I have touched so many in the past 7 ½ years. Whether it is someone going through it themselves or a loved one, the joy I get when I can see or hear that they are a little less scared, a little more ready to continue the fight, a little more ready to step up to the plate and provide that support and a lot more ready to live is too much to describe.
v Courage
Being able to face this no matter what it takes. I often hear people say that there is no way they could ever have dealt with all of the things I have. My response, “BULLSHIT!” We are capable of so much when pressed. The question becomes what is the most important thing to you. For all of us it is life or death. Given that naked truth we would all choose to live. Once that choice is made we are now ready for the fight. I think the other component is something I addressed above. Do you have the strength to share, to reach out and help others while dealing with your own issues, concerns and pain. They say that you need to become selfish to fight cancer and that is true to a point. There will come a time when you are passed a critical treatment and/or recovery and you need to start looking outward again. For those of you who know me well you are not going to believe that I am saying this; it is not all about me (or you).
v Hope and Faith
I think these two elements go together. My faith has played a huge role in my survival. When I went through the first surgery my sisters asked me if I was scared of dying. I told them no. I truly believed that I would come through this long, dangerous procedure just fine. They looked at me with what was either skepticism or the belief that I had lost it. What gave me that strength were three things. Faith in my doctor, faith in God and faith in myself. I don’t quite remember what the right order was :>) Before I became sick going through a Shabbat service was often a matter of rote. Sure I knew the prayers by heart and recited them with a certain amount of emotion. But it did not really mean anything. Faith is not just about ritual, it is so much more than that. It is your connection to God and ritual can help to facilitate that or simply be part of the process. It is not an end to itself. Now when I am at a service I am so much more thoughtful. I sing almost as loud as the cantor. I often pray with my eyes closed to help me focus and reflect. Temple has truly become a sanctuary, a place to heal, to hope and to live. I have been in various debates over the years about how can I still believe in god after all I have been through. While I am certainly not thrilled about the hand I’ve been dealt with, it is not all doom and gloom. Who is to say that I cannot be the first person who beats this? Who is to say that they will not develop a cure for this type of tumor? Who is to say that I cannot lead a full and enriching life for what time I have? When time suddenly seems so important maybe you waste a little less. Maybe you do a little more (this probably does not apply to all of the things my wife wants me to do around the house). People ask me why I am back on the board and keep doing these sleepovers at the temple with the youth group. My answer is simple, because it is fun to me and it is important to the kids. 8 years ago I was probably too busy for that nonsense. Survival cannot be achieved without hope and faith.
So what have I learned over the almost 8 years that I have been dealing with all of this?
· I got up today, this is a good thing
· We are all stronger than we think
· All of the mundane things we worry about are complete and utter bullshit.
· Family is always there for you but the bad times are when you find out who the true friends are
· A smile and a laugh is are just as effective as any cancer treatment
· It is not just about me. I am now a member of the cancer universe. I have an obligation to help, to share, to council, to hug and to tell a joke when it seems impossible that someone can laugh
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