It’s time for the truth.
It’s been hard for me to put the raw feelings of facing my mortality into words, and I’ve been avoiding publishing my battle for the world to see.
It was important that I discussed my thoughts and ideas privately with my family.
I hope my recent experiences help others who are facing life threatening disorders.
Sometime this fall one of the palliative care practitioners said I should decide my course of treatment during my period of health.
She said this in light of the fact that my cancer will very likely return, and in the interim, I will be battling my graft vs. host disease.
I’m glad I made the choice to be guided by palliative care, not only for their immense expertise in managing my pain issues, but for the insights and understanding they provide.
I have not found any other outlet that allows me to accept that I will probably die of this disease openly.
The ability to voice that I have not only accepted this as my probable fate, but that I am okay with it, has been a comfort I have yet to feel.
The idea that someone as ill as I have been needs to face their battles valiantly with the goal of beating the disease has been a burden.
It’s a weight I no longer want to bear.
I’m happy that I have reached the point that I can accept the dying process as an integral, interesting part of life.
It’s an adventure in itself.
For years now, I’ve pitied those that die suddenly knowing that they have been robbed of the beauty and honesty people show when they know your presence is not guaranteed.
I think everyone should experience the celebration of life I have during my disease.
After my release from the hospital and during my recovery from H1N1, I decided I wanted to see what my life would be like accepting standard treatments.
As you all saw, I declined. I declined quickly.
I declined so rapidly that I contemplated stopping treatment entirely.
It became apparent that I wouldn’t survive without active intervention.
It was the first time in my life that I considered not intervening.
I would have survived a matter of weeks at most. My lungs were failing and the rest of my body was following quickly. I lost 6 lbs in a week. I was emaciated.
Interestingly, I went about making this decision like most any other major life decision, such as whether to get married, have kids, go to college, etc.
I weighed the pros and the cons, except in this instance, I was forced to picture a world without me.
With me out of the equation, The strongest factor I considered was how it would affect my family and their quality of life.
I’d become concerned that my existence caused more pain than joy.
When I stop bringing love and joy to others, I stop living.
I looked for ways that I could make my family happy, but came up empty handed in light of my lung issues.
But, of course, there is always “The X Factor.”
It’s safe to say that if I didn’t have my beautiful family, I may have made different decisions regarding my care, but I promised my little man a miracle.
I’m so happy it could be given to him.
I think in finally crossing the line and accepting any outcome, I’ve been freed.
I’ve been content and joyous these past weeks.
It’s taken as much time for X to stop being skeptical.
Prior to the holidays, he had become cranky and anxious. We tried to liken it to holiday stress. We had a couple of big family weekends and events.
What was really on his mind was whether or not I’d get better for Christmas.
Can you imagine having the pressure at 6 years old, during Christmas time, of wondering whether or not Santa and God will really answer your prayers?
Of course, he was anxious and whiny.
Of course, he didn’t care about school work.
Life has changed so quickly, and I’m glad I chose to return to it, even though the return is temporary.
I’m free to take life slowly, accomplish one task at a time, with the ultimate goal of the best experience ever.
I’ve been trying to pass this along to X.
My new goal is to have the perfect day everyday, and to pass that on to others.