Tuesday, December 6, 2011

Where we are

Hey everyone!
First let me say thanks for all the prayers and well wishing. I'm going to tell all of you everything I know to this point, I wish I could tell you more. At this point my doctors have decided to discontinue with the chemo therapy that I was doing. It obviously is not effective since another tumor has started to grow despite doing it. We may change chemo therapy drugs.

Starting radiation again is something we're going to explore. I have an appointment next thurs. with a radio-oncologist. He will evaluate the likelihood that radiation therapy will have any effect on the tumor.We did not do that in the first place because it is not proven to be effectiveon a tumor within the same radiation field as a previous tumor.

My oncologist has informed me that the options we're discussing are not likely to be solutions. Any effect that they may have is likely to just be temporary. So, I am not inclined to do things which will make whatever time I have left miserable.

I am exploring clinical trials throughout the country to see if I am eligible, but these are experiments and may not work even if I am admitted. This is the last front I have to put up a fight.

I don't know why but another surgery seems like it is not an option. I have reached out for second opinions and alternatives.

I am just being completely honest at this point. I am not quitting but options are limited. My time seems to be limited, I don't know how limited. I have given extra ordinary effort toward this fight but I am without the tools to continue to do anything but make each day count. I am so sorry I could not will this into the happy ending that all of us wanted this to be.

I am willing to talk with anyone but it is exhausting and extremely difficult to try to explain this. It is easier to text or e-mail


ddbmc said...

Dearest John,

Our thoughts and prayers are with you and all of your family! You do not walk alone. We all walk beside you. We are shoulders to lean on, arms to hold you close. Our ears listen to your voice or your silence, your shouts of anger or your tears. We send our love to surround you like a warm blanket on a cold winter morning.

You have grown into such a fine young man, dealing with incredible difficulty. No matter what YOU may think about yourself, you've handled this terrible burden nature has placed upon you with courage, grace and dignity.

The hands of God have worked through Dr. Quinones, your mother, sister, father, grandparents, cousins and friends-with every life you have touched in your journey. But it is you who have given us an astounding gift-with each thought that you share! You light the fire of "John" inside of us. The honor is ours, in knowing you!

Your writings are a wonderful way to let out all that is contained within! Keep them up for as long as you can! We are here. We are listening. We are sending you love.

Dede McMenamy

Jen said...

Dear John. We all have limited time,that is what makes us humans. The difference is that you are aware of your vulnerability, and I believe that makes you wiser. I do not first hand what you are going through, but my mom was diagnosed with a glioblastoma one and a half years ago, and all I keep thinking is that I am not (and will not be any time soon) ready to say goodbye to her. We both know statistics are not encouraging, but I believe that the world is not defined by a simple ecuation, and there is not a way to predict what YOUR outcome is going to be.
Make the most of every day you have, not because you could die soon (any one could die any day, with or without glioblastoma), but because that is the only way to live.
Thank you for sharing.