When I was first diagnosed with cardiac angiosarcoma in late August 2009, the first thing I did (once I caught my breath and recovered a bit from the lung biopsy that was done on the 28th of August) was to go to the Internet and begin searching for my disease. My research instincts kicked in; I signed up for as many free access medical case history sites as I could, repeatedly keyed in the words "angiosarcoma", "cardiac", "right atrium" and "metastasized angiosarcoma", and found several links that led me to other routes of information that I pursued – whenever my energy levels and attention span allowed.
I recall back in September, Dem in the Heart of Texas wrote this about me...
Don't bother googling her disease - it's depressingly bad news.
Dem was right about this. If you are diagnosed with a critical, often terminal disease, especially a rare one, sometimes all you will find on the intertoobz is just plain ugly bad stuff.
So, that's when you get out the internet rake and start swiping away at the stuff that floats to the top. Dig deeper. Find doctors and specialists who are familiar with your illness. Track down the national website for the disease you have. Veer away from stuff that gets you down in those initial days; go to positive resource sites. Ask your nurses, your doctors. Ask your friends if you can't do it. Ask your pals to get information for you and request that they tailor it to your particular emotional needs at the time. If you have time. If you have days ahead, if you gain some health back, the bad stuff gets easier to deal with.
Seriously, knowledge is power. If not for you, maybe it will be for a family member. Just the idea that you are engaged in your disease and treatment may buoy your friends and family when they discover that you are not going into that proverbial cave to die. You're going in there to Google! Or Bing!
You've never given up before, have you? The information may help them down the line, especially if it's a genetic thing. Maybe, just maybe, becoming your own expert might save your life. The doctors don't really know on an individual-by-individual basis – especially when it's a diagnosis where the sampling of historical cases is extremely low (as in my case).
This gives you insight on how I've always approached things. Find information, track down the best resources and experts and read the heck out of what I find. In the past few months of my treatment and in discussion with several other cancer patients and quite a few transplant recipients (transplants being a particular specialty at the University of Washington Medical Center in Seattle), I've discovered that not everyone – in fact, astoundingly few patients – seek information in the same way as I have, or are as engaged with their doctors and in hospital caregivers as I am.
What I've heard from other patients should have come as no surprise.
Nearly thirty years ago, when my mother was diagnosed with lung cancer, she was so frightened of the diagnosis that the mere learning of more information, even positive results, sent her into a panic. I understood her reaction at the time because I understood the statistics in the early 80's. My oldest sister died of lymphoma in 1973, and three of my mother's sisters, as well as her mother were also deceased from various forms of colorectal and stomach cancers in the years preceding my mother's own diagnosis. The cancer death rate in our family was daunting. The end of days narratives of each family member were painfully woven into the oral history and suspected health predispositions of our family, at least on my maternal side.
Back in those days, I and my brother both researched and wrote to cancer institutes around the country for as much information as we could find. We were the ones who successfully encouraged Mom to get a second opinion. We were the ones who asked the questions of the doctors and made certain we had access to her blood lab results. We acted as patient advocates for our mom and I honestly don't believe she ever lifted a pamphlet or any one of the many articles we tracked down in medical journals at the time that detailed statistics on the prognosis of her disease. Never looked at those hand-written notes we took that covered the post-operative complications that could result. She had us.
Mom was a voracious reader. A businesswoman who would, through anecdotal discussion with friends and professionals and referrals, be her own best advocate and source of information in other areas – whether that might be contractors, plumbers, painters, or home appliances, would fall silent and choked up in the presence of a physician. I saw her many times simply sit in a doctor's office and not ask any of the searching, initial follow-up questions that can be asked of any professional who's going to do work for you.
- Can you give a referral for specialist who focuses on this disease? I'd like a second opinion.
- How many cases of this [disease] have you treated in your career?
- Can your staff help me determine my insurance eligibility for treatment?
- Will you be able to coordinate all of my care while I'm treatment or do I need to talk with my family doctor?
- Can you put me in touch with support groups for this disease?
- What is the short term, long term prognosis of this disease? (Some docs will tell you what they know and they may be uninformed, and some docs may never broach a prognosis with a patient if they are not asked. Always take prognosis discussions with a grain of salt. I'm still here and according to at least two doctors I spoke with in August, I should be dead by now! But it doesn't mean it's not a question that should be asked.)
Those questions above were ones I asked when my own disease was finally diagnosed. I have asked many, many more questions since then. I always ask for copies (CD images) of my scans and I get them. I always ask for hard copy printouts of my lab work. And I get them. I always familiarize myself with new drugs that I'm given and research the side effects. And monitor the chemo bags that go up on the IV pole when I'm in the hospital doing chemo.
"Why?", you ask. I'm a bit of a control freak. It gives me power, emotionally, fleeting and ephemereal. All emotional power is such. It coats the angst and it salves the soul and it gives you reins to grasp when you wake up each morning.
After all, I never have yardwork done without evaluating the quality of the pruning and the edging on the grass. I've never had my brake pads replaced without asking to see the old pads (and rotors if those have been replaced). I'm perfectly willing to follow through with requests and complaints if I don't think something has been done – either enough, or done right. I don't leave it to other people and assume that things are being done right. There may be a time when I will have to, but I'm preparing the healthcare groundwork for others (my kids in this case) to take over if they have to. Perhaps learn from and apply to themselves in the future, should they need to.
I'm the basic pain in the ass. You should be, too.
Sooner or later you will be in the health care system as a patient. Learn ahead of time that you have primacy. You are the primary individual who must become engaged in your own care. No matter how selfless you've been in your life, or how involved in your kids' lives, or your work lives, or your circle of friends, managing your own health is something you need to learn. Doesn't matter how shy you are or how easily intimidated. No one can manage your own body, your own health better than you.
If you are too ill or fatigued to take on your own management – and I understand this well – then pick the most articulate, caring person you know who is willing to go to doctor appointments with you, who is willing to take notes during the appointment for follow-up later, who has the stamina and engagement to act as a filter for you.
If you have no one, contact a patient advocacy organization – there are several in most cities. The Patient Advocate Foundation might also be able to give you a local referral to a reputable advocacy organization or they might be able to assist you in deciphering terminology over the phone.
Some hospitals offer patient advocates; however, advocates for some health care organizations, facilities, and insurance companies may be tied to the risk management department of the facility or of the insurance company. If you go this route, make certain to ask what their mission is and who they report to on oversight of what they do.
Many times patients are simply too blown away to listen to what they've been told. Too defeated, too sick, too overwhelmed by the lingo and the attitudes of the health care professionals around them, and too stressed about all the other life ramifications that a critical illness diagnosis forces on a body.
CURE a cancer news, research and education magazine, cites concerning health literacy statistics in the US, especially in the area of literacy surrounding complex medical information, as reported in the National Assessment of Adult Literacy (2003).
Only a small fraction of adults, 12 percent, is considered to be proficient at understanding complex health information, according to the 2003 National Assessment of Adult Literacy. The survey was the federal government’s first effort to quantify levels of health literacy, the ability of individuals to obtain, process, and understand the concepts and terms crucial to making informed medical decisions. Even people with high levels of education and strong literacy skills can face health literacy challenges, the survey found.
Ask for help, dammit, if you need it. But ask.
I also said this once upon a time:
Fences. Walls. What we keep out, what we try to hold off, what makes us feel secure. What protects us, what imprisons us. Where is the line?
The wall you should try not to erect, the wall that does not make you secure, the wall that will imprison you inevitably, emotionally, is the wall you might build as emotional protection from bad news.
Open up the walls between you and your doctor. Let them know you are involved. Become informed – it's the best armor out there, no matter what the diagnosis.
Resource links, direct and indirect: