THURSDAY NIGHT IS HEALTH CARE CHANGE NIGHT, a weekly Daily Kos Health Care Series.
The Thursday healthcare series is intended to help you make meaningful changes and choices in your life.
I hope in some small way, my contribution this evening will help achieve this noble goal.
Sadly, I'm going to be discussing the choices we all may face in dealing with a terminal illness.
If you can bear to read everything, you'll find at the end several resources which may help you assist someone facing imminent death.
This diary is not meant to depress or scare you. Just to let you know that whatever problems you're dealing with, and God knows, we're all facing daily challenges, be grateful that your reality does not resemble what I'm about to descibe.
I'm going to tell you about a very young woman who is dying of breast cancer. Yes, I know, it's not pleasant to write and it won't be easy to read. But please stay with me. Maybe it will give you a renewed passion for life, no matter the problems you are facing.
My friend is forty. Forty. 40.
She has been living the horror of breast cancer for several years now. At about the age of 37, she was diagnosed with Stage II breast cancer, she had grueling chemotherapy followed by a mastectomy ( I think this was the order of treatment).
She thought--we all believed, after everything she endured--the deforming surgery on her young body, the steroids which transformed her beautiful face, the harsh chemotherapy which caused her lustrous black hair to fall out in massive clumps, that she had the vicious killer beat.
But we were wrong.
In early February we learned the cancer had returned. She turned forty on March 20th.
As you read this, you might want to ask yourself what would you happily give up to live another week another month, another year? What different choices might you consider?
Here's her story.
My young friend went to her doctor several years ago with a lump in her breast. She was sent home and told to come back in three or four months. She did what she was told. She went home and returned several months later. The doctor must have felt that due to her age the lump would go away--or something along these lines--I'm not a doctor. Well, the lump didn't go away and by the time she got diagnosed, she had Stage Two breast cancer.
I'm not going to dwell this evening on the issue of possible or even probable medical negligence. I'm not a doctor and I don't pretend to be one. My intuition tells me that she was not given appropriate medical care, though because of her age, maybe an immediate mammogram was not the standard of care. I don't know. There's no going back. I also don't know, if the cancer had been detected when she first went to her doctor, would that four or so months have made a difference. By the time she was diagnosed, it had spend to at least several lymph nodes.
I'm writing this diary to inform you. The lesson I learn from this unspeakable tragedy is that we all have to be proactive healthcare consumers. We have to do this for ourselves and those we love. We have to soldier on in some fashion despite all the obstacles that our healthcare system imposes on us. I know what you're thinking--easier said than done. If we think there is some problem and a nitwit doctor doesn't, find another doctor.
And it goes without saying, the bigger lesson, though a worn cliche, is we need to live every day well.
Returning for a moment to my beautiful friend, how did we get to this awful place?
About six weeks ago, she fell and bruised herself quite badly. She went to the hospital, and was given a bone scan which showed the cancer was in all her bones. Yes, all her bones. I spoke to a nurse, a mutual friend, who said she had read the bone scan report and it was bad, really bad. As they say in the oncology business, "it's everywhere". A later CT or MRI (unsure which test she had), revealed the cancer was also in her liver.
She's decided to forego any additional treatment. She's dying. She has three children, her son is thirteen. If you can bear it, I urge you to read the harroring account by David Reiff, about the death of his mother the writer, Susan Sontag. Sontag made a very different decision, she chose to fight until literally her last breath.
I'd like to share with you a piece of an email I received from another friend who recently visited the friend with breast cancer. I'm removing all names simply to protect her privacy.
I visited xxxx today. She was resting when I got there but came from her bedroom with a great smile and hug. She was very happy to see me. We went to an small open room off her living room. It was set up like a shrine with religious statues and saints and candles,...like walking into a small chapel in a catholic church. She was peaceful and hopeful. We were so happy to see each other. It's difficult to explain how we found everything to laugh about and still get into the difficult dialogue. She believes that she will be healed. This is GOOD. I encouraged her NOT TO GIVE UP. She is completely doing the "Spiritual" method. She showed me a pamphlet that she is following which is a Chinese healing (I wish I had written it down) and she said they don't believe in any medications, only prayer and special foods, however, she is taking her Percocet for pain. She cut her dosage in half and it seems to be holding her. She walks very slowly and her major pain is coming from her thighs and low back. She is very supported by the nurses from Hospice. They are coming twice a week and then two days of physical therapy helping her to get around, dress herself without creating more pain for herself. At first she was very fearful of the word Hospice. She thought it was the end. But the nurse told her that many of their patients are still thriving after years. This was so encouraging to xxx. Her main problem has been dressing herself. The pain in her thighs makes it impossible for her to move to dress. She looks beautiful and serene. She said, "I believe I will be healed, but if God wants me, I hope he takes me soon".
I met this lovely and beautiful young woman about 10 or 11 years ago when she came to help a family member who was recovering from an illness. She's a naturalized American citizen, originally from the Phillipines. I remember how excited she was when she was finally notified that her citizenship application had been approved. This is something else, we take for granted. And I'm especially guilty of threatening to give up on this country and leave--I do it all the time, shame on me. If you haven't been involved first hand in the ardouous path to citizenship, you have no idea what that document and a U.S. Passport means to an immigrant.
So she came one day, we all fell in love with her and she stayed. She is like a member of the family. The first day she arrived she brought along her young son who all those years ago was about two or three years old, now he's thirteen. And oh how my heart breaks for this child.
I cannot imagine being so young and watching a parent die before your eyes. I just can't. As children we believe our parents are immortal--they're not. But surely it isn't God's purpose to let our parents die at forty.
I've never been privy to someone as they actually make preparations to die. Is there a right way and a wrong way? Why do some people fight and fight and fight? And others, like my friend say, if it's your will, dear Lord, then take me.
Here's the way another American, also facing death, has chosen to use his remaining time.
You may, or may not have heard about last lecture of Randy Pausch. It's become an internets sensation. The lecture is a little over an hour, I urge you to watch at least a piece, I did, and it's incredibly moving and uplifting.
I suppose I wouldn't be nyceve, if I didn't wonder how people insurance cope with the immense financial toll and the emotional strains associated with end-of-life crises. It is unimaginable that this is the reality for so many in the United States, but it is. I am certain we will hearing numbing and horrifying comments about how uninsured American families cope and struggle to provide their loved ones with a measure of dignity in their final days.
My final reason for telling you about this is so you can turn to those you love and cherish and tell them how much they mean to you. Spend your precious days well--time is more valuable than a block of gold.
For me, I just keep thinking about the children and her courage. She's sad but says she's not scared.
It's all so Goddamn unfair.
- The family and Medical Leave Act - See if you qualify, if you do, use it! Here's a link to the Department of Labor FAML Act web site.
- Cooking and preparing nutritious food for someone who is gravely ill, is a great and generous contribution. We're trying to be sure that our friend has a reliable supply of good food for herself and her children.
- Hospice care and visiting nurses are extremely important to the end of life. My understanding is that if you are privileged to have insurance, many insurance polices cover in home hospice care. Here's extensive information fromThe American Cancer Society on hospice care.
- My dear friend who is an oncologist, told me that there are some new studies which have demonstrated thatMelatonin and green tea extract may help some cancer patients with pain control and even increase the feeling of well-being. Certainly worth looking into.
- Please give us your suggestions.
More than anything, stay healthy.
Certainly do your utmost to maintain your health until we have a Democrat in the White House and guaranteed and affordable cradle to grave healthcare for all Americans.
And on a final note. I want to thank my oncologist friend, for giving me a few pointers on this difficult diary. I had originally called it The Dying Room. He suggested that was not an appropriate title. He's correct. He's rarely wrong.