I am angry. I am frustrated. I am confused. As I've said before, Jeff always thought this blog was meant to help me express my emotions through his fight with cancer. Then it was meant to help me deal with my fears after his death. It then morphed into a pleas to the medical community to improve the medical services for cancer patients.
Now it is a place I write of my disdain and mistrust of how we are caring for those with cancer. Why aren't there more answers? Why does someone have to get really sick before anyone takes notice? Why do we have to research pages and pages of medical jargon and websites trying to find answers that the doctors don't have time to give? I'm overwhelmed by the number of those in my life--some that are new names to me and some that are dear names to me--who are trying to just find a way to have another week, month, year with their families. Some are children--so small and frail and frightened. Some are mothers--strong and loving and determined. Some are fathers--tough and caring and just want to shelter their family from their own fear. All are brave, all are fighters, all just want answers.
We want to know we've done our best to fight the cancer. The questions that float through our tired brains at night--"Did we do everything we could? Did we go everywhere we could go? Did we have the best doctors? Did we take the best course of treatment? Are there clinical trials we should have tried? When do we stop and just say let me rest and love my family?"
Where are the answers? "I don't know," is not good enough. It is not OK to hear these words when a person is dealing with cancer.
Why are there millions of dollars being poured into SuperBowl Ads, super salaries for superstars, $120 million baseball contracts, Avatar movies, HGTV Million Dollar Rooms, Wall Street bonuses, bank bailouts....Doesn't anyone who has the power to help get it? We need to find a cure! We need to make it easier to file claims! By all means, a cancer patient should not worry about how they are going to pay for their care. They should not worry if they are going to lose their house. They should not worry if they could possibly leave a mountain of debt for their loved ones. Our priorities are way out of line.
It would help to see some progress locally. I've been ranting like a crazy person about how we need to improve care from the oncology offices to the emergency rooms for cancer patients for the past two years--and nothing. I've seen money poured into more parking garages, some ideas on how to track medical care for the homeless, articles that describe more nursing classes. But we are still lacking an Urgent Care Cancer Facility--even the addition of a 24/7 on-call oncology nurse practitioner or oncologist for cancer patients in the ER. We are lacking a dedicated room in our ER's for cancer patients who need isolation and special care. We are lacking the access to and availability of research for clinical trials for ALL cancers--colon, melanoma, peritoneal, pancreatic. We are lacking the simple ability for a patient's scans to make it from one facility to another within a reasonable amount of time. We are lacking the simple ability to keep track of our patient's records.
I want better for the future. I want more from our medical facilities. I want faces of cancer patients--those still fighting and those who have finished their fight--posted to the walls of the administrative and executive offices of the hospitals. I want these executives to be the ones to tell the patients that they can't get well because the hospital chose to redecorate or build a parking garage instead of using those dollars to improve the oncology unit, or to train the ER staff on how to care for cancer patients in their care, or to pay for on call oncology staff to help with 24/7 urgent cancer care. I want them to sit down and comb through the websites and the clinical trial paper descriptions and sort it all out and make sense of it all. I want them to file the claims and figure out how to pay the bills. Then I want them to try to sleep at night.
I am angry. I am frustrated. I am disgusted.
Friday, January 29, 2010
Miracles
Miracle: Any amazing or wonderful occurrence. (wordnetweb.princeton.edu)
"We need a miracle"—that is what we say as humans when an event happens in our lives that we can’t find an answer for medically, legally, environmentally—so we finally turn to the Spiritual and ask for a miracle. But we’ve already seen the miracle. It is there before us, as the definition states, “Any amazing and wonderful occurrence.”
My children are the miracle. Jeff’s life and passing were the miracle. Each breath we take is the miracle. My friend Steph and her family are the miracle. By definition all these people and their lives are amazing and wonderful occurrences. It all comes together to make my miracle.
The miracle is happening all around us. Take the time, just stop for a moment and recognize the miracles in your life. They aren’t the unbelievable—Miracles are right in front of you. In the crib down the hall, in the family room with the Disney Channel blasting from the TV, across the dinner table from you, across town sitting in a small house waiting for calls from her grown children…
Where would we be without our Miracles?
"We need a miracle"—that is what we say as humans when an event happens in our lives that we can’t find an answer for medically, legally, environmentally—so we finally turn to the Spiritual and ask for a miracle. But we’ve already seen the miracle. It is there before us, as the definition states, “Any amazing and wonderful occurrence.”
My children are the miracle. Jeff’s life and passing were the miracle. Each breath we take is the miracle. My friend Steph and her family are the miracle. By definition all these people and their lives are amazing and wonderful occurrences. It all comes together to make my miracle.
The miracle is happening all around us. Take the time, just stop for a moment and recognize the miracles in your life. They aren’t the unbelievable—Miracles are right in front of you. In the crib down the hall, in the family room with the Disney Channel blasting from the TV, across the dinner table from you, across town sitting in a small house waiting for calls from her grown children…
Where would we be without our Miracles?
Monday, January 25, 2010
I have been reading the book by Mitch Albom, titled Have a Little Faith. The main character in the book is an elderly Rabbi, who has summoned Mr. Albom, and asked that he be the one to write his eulogy. Over a number of years, Albom visits the Rabbi, much in the same way he visited with his college professor, Morrie, in his book, Tuesdays with Morrie. These visits help in understanding the man Albom must eventually eulogize. This story is incredibly spiritual and very emotionally driven. I think I feel it more so with "Have a Little Faith", because of what I am experiencing in my life.
Since Jeff’s illness was diagnosed over two years ago, and then his death, it has been a constant barrage of adrenaline fed events. There has been so much to handle, to care for, to nurse, to nurture, to pray for, to fix, to pick-up, to clean-up, to repair, to fear, to fight for, and to love, that my life has been in a constant sense of urgency. I rarely eat sitting down, because I feel like if I don’t clean something or pay a bill or make a list, even while eating, that something will slip out of my grasp…my control…and my world will spin off its axis again.
It all feels very surreal sometimes. Like the times when you are about to say something that you feel is important, but something or someone interrupts you, and by the time it is your turn to speak again, you have completely forgotten that amazing idea you had wanted to share--one that you were certain was life changing. It makes you crazy trying to remember what you wanted to say and you know it’s right there at the edge of your memory, but then it just slips away out of your grasp, and you feel a sense of fallibility and frustration that you let such an important thing go. A sense of something left uncompleted, left unsaid.
This is how I describe my life. And perhaps, my life has been this way long before the words cancer were uttered.
My Faith could be described as little right now. My Faith that there isn’t anything out there to be scared of, as I tell my little girls when they hear an odd noise at night. My Faith that I can handle anything that comes my way because look at what I have had to handle and survived. My Faith that I can have peace and know that God is guiding us through the storm. I tell people I am close to, that I plan on having quite the talk with God when I pass through on my way to who knows where. I need to understand why children die at the hands of beasts; why cancer is allowed to run rampant through our midst; why money is what controls who gets what is needed in this life on this earth; why innocents are injured and the guilty go free; why people can be careless and make horrendous mistakes and not be sorry; why those who makes mistakes and are deeply sorry cannot be forgiven and are judged; why people cannot put themselves into the shoes of those they judge and see for an instant a pain never imagined.
But there is the good that is plentiful. It is overshadowed quite often by the fear and bitterness we are served. The good is there. The Faith is there. God is there. Not how we demand it, or expect it, or desire it. The good is just there. And we cannot see it until we can be humble enough to receive it in the simplest gifts. I know what my “good” is. I cannot tell you and expect you to feel it too, because my interpretation of good is going to vary from yours, and rightfully so. Each and every one of us needs to seek out what is good in his or her life and focus on that good. Soak it up, digest it, and take in every second of that good. That is what is life changing. That is the spectacular idea that you wanted to share. Look for your good, your faith, your peace—it’s there in the storm or the still of night when sleep evades or when fear keeps you from taking another breath. God gives the good—He gives you the faith you need, whether it’s little or big. And He is always there and does not slip out of your grasp….
Since Jeff’s illness was diagnosed over two years ago, and then his death, it has been a constant barrage of adrenaline fed events. There has been so much to handle, to care for, to nurse, to nurture, to pray for, to fix, to pick-up, to clean-up, to repair, to fear, to fight for, and to love, that my life has been in a constant sense of urgency. I rarely eat sitting down, because I feel like if I don’t clean something or pay a bill or make a list, even while eating, that something will slip out of my grasp…my control…and my world will spin off its axis again.
It all feels very surreal sometimes. Like the times when you are about to say something that you feel is important, but something or someone interrupts you, and by the time it is your turn to speak again, you have completely forgotten that amazing idea you had wanted to share--one that you were certain was life changing. It makes you crazy trying to remember what you wanted to say and you know it’s right there at the edge of your memory, but then it just slips away out of your grasp, and you feel a sense of fallibility and frustration that you let such an important thing go. A sense of something left uncompleted, left unsaid.
This is how I describe my life. And perhaps, my life has been this way long before the words cancer were uttered.
My Faith could be described as little right now. My Faith that there isn’t anything out there to be scared of, as I tell my little girls when they hear an odd noise at night. My Faith that I can handle anything that comes my way because look at what I have had to handle and survived. My Faith that I can have peace and know that God is guiding us through the storm. I tell people I am close to, that I plan on having quite the talk with God when I pass through on my way to who knows where. I need to understand why children die at the hands of beasts; why cancer is allowed to run rampant through our midst; why money is what controls who gets what is needed in this life on this earth; why innocents are injured and the guilty go free; why people can be careless and make horrendous mistakes and not be sorry; why those who makes mistakes and are deeply sorry cannot be forgiven and are judged; why people cannot put themselves into the shoes of those they judge and see for an instant a pain never imagined.
But there is the good that is plentiful. It is overshadowed quite often by the fear and bitterness we are served. The good is there. The Faith is there. God is there. Not how we demand it, or expect it, or desire it. The good is just there. And we cannot see it until we can be humble enough to receive it in the simplest gifts. I know what my “good” is. I cannot tell you and expect you to feel it too, because my interpretation of good is going to vary from yours, and rightfully so. Each and every one of us needs to seek out what is good in his or her life and focus on that good. Soak it up, digest it, and take in every second of that good. That is what is life changing. That is the spectacular idea that you wanted to share. Look for your good, your faith, your peace—it’s there in the storm or the still of night when sleep evades or when fear keeps you from taking another breath. God gives the good—He gives you the faith you need, whether it’s little or big. And He is always there and does not slip out of your grasp….
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