My neck isn’t swollen anymore! I have no signs of cancer!………………………………..
………………………………..
HA!!!
That was just a sick joke!
Get it? Sick joke, from me, the sick person.
The news is not THAT good, but I have really wanted to say those words.
I had to get it out somehow, even if it is in a morbid, heartless joke.
You will just have to keep praying for that cure and remember me on Thursday, the day my biopsy is tentatively scheduled at Dana Farber in Boston.
I will have the exact time and date today sometime.
The good news still is pretty good even though it has no bearing on my health status.
I’ve just been so busy and overwhelmed by the events of the past week that I haven’t gotten around to posting (or preparing).
Actually, I’ve been running around like a mad woman coordinating soccer games, basketball camp, unpacking after camping, doing laundry, fixing up portions of the house (I do this when I’m under extreme stress), decorating (This goes with the fixing. I can’t stop a project that is half done.), and making art (Also, part of fixing and decorating, but definitely a coping mechanism).
As you may be able to tell, I try to control my surroundings, especially my house, when my body does terrible things and goes haywire on things. At least when I get home from treatments the place will be serene.
Thanks Jake for coming over and fixing the wholes in the mudroom walls.
To everybody else, they didn’t get there by kicking or punching, we had a puppy five years ago, Kaiser, that passed away of a congenital liver defect that liked to eat drywall, hence the holes.
Good news is. . . . . .
I have a meeting with the Chief Information Officer (CIO) of The NH Department of Health today regarding my Patients As Partners Idea!!!!
I have a big political meeting today to try to cure the woes of the health care system and help providers and patients alike unite!
I feel very surreal.
I still can’t quite decide if the Senators who have been so supportive of this idea (Thank you D’Allessandro, Sgambati, and O’Dell) are just humoring me since I am so young and sick or are really interested in seeing my plan to fruition.
With this being my first political meeting ever, I’m not sure what to expect, but Peter Ames, Director of Public Relations and Advocacy for The American Cancer Society in NH, has given me an outline and words of encouragement. He appears well schooled in coordinating advocacy and meetings on behalf of new, innovative ideas.
Unfortunately, He has a conflict and can’t make our meeting.
I won’t have a crutch to lean on, but I don’t think I’ll need it.
My father, Victor, will be joining me as my chauffeur and perpetual partner.
Again, if you are unaware of my big Patients As Partners plan, I will summarize it for you: Patients as Partners is an online social networking site that will function as an electronic case manager and organizational tool to formally connect health care providers and patients to ease access of care and transmission of information thus streamlining processes making them more efficient to control costs of care.
Are we all clear?
Of course, there will be many questions.
I have made a cheat sheet of key points:
Patients as Partners will function as an on-line Electronic Case Management System that combines components of major existing sites including Dartmouth Hitchcock’s “Patients Online,”patientslikeme.com, facebook, and the mayo clinics online case manager.
There is currently no formal means of connecting providers treating the same patient at different locations. The information a patient receives in a consult is often left to be transmitted by the patient, a lay person.
The site would also have the capacity to be elaborated upon beyond social networking to include database management through SQL or SASS that could acquire and organize health information to study how to best treat patients, improving quality of care for patients and creating protocols for disease that would contain costs and avoid costly testing that is deemed unnecessary.I do think Patients As Partners, from a health care reform perspective as well as from a business perspective, could, not only contain health care costs through streamlining processes, treating complex care cases early and efficiently for the best care outcomes, easing accessibility to care thus avoiding expensive emergency room visits and encouraging regular health check-ups, avoiding preventable medical mistakes due to communication errors, but it could also offset some of the cost of implementing healthcare reform to provide insurance coverage for all statewide.
6 comments:
Good luck today, Hillary. With your enthusiasm and experience you'll do fine and they should be hanging on your every word. I'll be thinking of you. Chin up!
Eileen
Hillary --- GOOD LUCK!
Marleigh
Hillary, I can't wait to hear how you made out...I bet per usual you WOWED them...you are one amazing woman. I think of you all the time......
this is a great idea. my pulmonologist was complaining just yesterday that he never gets information from our other drs. this will be a great way to make sharing information so much easier. if this is open to people everywhere, i'll definitely be signing up. hope the meeting went well.
You go girl!! Unless they are totally stone stupid, they will be dazzled just like the rest of us. I think this is a huge undertaking that will make a difference to a lot of people. So keep going ... stay strong ... & know that a lot of us are behind you.
F
Good luck at Dana Farber tomorrow Hil! I'm praying it goes well.
Love,
Nic
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