If I haven't already told you about seeking out social network connections to learn about and cope with your disability and/or serious illness, I need to do it now. Going through a traumatic medical ordeal can be isolating and overwhelming, but finding a community of others surviving similar circumstances can bring hope, comfort, and even vital information that could help your own healthcare team.
One especially isolating factor for me has been the sheer rarity of this particular type of cancer. At less than 1% of all cancer diagnoses, it's easy to feel like there's no one out there who even knows enough about it to give you a fighting chance. Fortunately, there is a Facebook group for patients and family members with Epithelioid Hemangioendothelioma, and if there's one for such a rare disease as this, there's probably a group or many groups for you, too.
The group has been absolutely invaluable to so many of its members. In that community we finally find people sharing similar experiences, fears, and treatments to us. Perhaps most importantly, in that community we are finally able to compile real data from actual EHE patients to help inexperienced patients and their sometimes equally inexperienced oncologists develop a treatment plan with the best possible chances of success, and actively help researchers who are trying to understand the underlying cause and many different ways this disease presents.
If you have been diagnosed with a serious medical condition, are injured and/or disabled, I strongly encourage you to seek out your own group of similar individuals for support. You must always be mindful, however. Be careful to protect your most personal and confidential data, remember that no matter how similar, no two medical situations are ever exactly the same, and don't allow yourself to be completely overwhelmed in the deluge of information you will receive from other patients and supporters. Read with skepticism and critical thinking, and above all use the information to create meaningful and thorough dialog with your healthcare team - no amount of accurate anecdotal evidence from others can replace the importance of clear, detailed communication with your own doctors.
Used properly, a patient community can be a precious resource for treatment ideas, understanding, empathy, ties to financial and transportation assistance, and to finally not feel so alone in what you're going through. I hope you seek that camaraderie in your preferred social venues, be they online, faith-based, etc.
You can find the EHE group at https://www.facebook.com/groups/EHEcancer/
Monday, January 19, 2015
Thursday, January 15, 2015
My husband and I have long joked that I need to wear a sign like the one in the movie 28 Days, "Confront me if I do not ask for help." It's an acknowledgement of my stubborn ways and the fact that I sometimes make things harder for myself by being too intent on doing something on my own without help.
Lately I'm becoming aware of another warning I might need to wear, similar to the defiant threat from the babysitter in Adventures in Babysitting: "Don't f*** with the babysitter." Don't mess with me. I do not play around, I mean serious business and I generally do not consider losing an option.
Forget about all the struggle of the past four years to diagnose, treat, and overcome medical problems of life-changing proportions; this was a character trait from the very beginning I think. I've never dealt well with being told something was impossible or too hard or not for girls or any other artificial limitations. I'm the little girl who jumped off 5ft boulders and flapped her arms trying to fly, almost every day. For years. (R. Kelly had nothing on the amount of belief in me.)
This tenacity has manifested in a variety of ways in my working and private life. For example, I'm terrific at finding things. All sorts of lost things. "The such-and-such file folder is missing; no one can find it." Oh yes I can. Watch me. I have a fairly good eye for detail and an uncanny ability to remember where I've last seen something, be it a physical or a digital file.
Sometimes it manifests in direct conflicts with people. When confronted with the shocking financial betrayal of a colleague, for example, I relentlessly directed my finding skills at tracking down every possible byte of data that could assist in bringing the perpetrator to justice. (You do NOT want to give me a reason to internet stalk you.) When my eventual husband's ex-girlfriend attempted to wheedle her way back into his life with emotionally abusive ploys like how depressed she was now that he had moved on to long-distance dating me, I didn't waste much time on useless sympathy. I attempted to treat her in a cordial and friendly manner, but when she declared that her life was meaningless and included key phrases about being home alone and having available methods to harm herself, you bet your life I did what any trained peer counselor would do: despite being states away, I called her local police to respond to her potential suicide attempt.
So when a local healthcare provider who has never treated me left one practice to start another, and took the entire patient contact database from one site to the next, then used it in a reprehensible email spam campaign to recruit patients for experimental weight loss procedures, I was certainly annoyed by this rather unethical use of my patient data. I could've just deleted the spam, I suppose, but that's just not my style. I contacted the new office to determine how they got my data, and when I heard about how he took it from one practice to the next, even patients he'd never seen, I went ahead and contacted his former practice to make them aware of the extent of his data transfer and the nature in which he was employing it currently. They were shocked to hear of his activities and very glad to be made aware of it. But even if they hadn't been interested in the breach, my proverbial horns were sharp and ready to address the offending party myself if needed.
If you don't want to dance with the bull, don't wear red to the arena.