Rolling on Through

The Civil Rights Movement, the Women's Rights Movements, the Child Labor Movement and dozens of other movements in United States history have proven time and again that when a small committed group of individuals work to create change, indeed we can!
We have so much to win in America by coming out now! Join one of these great vigils or rallies in your area for HEALTHCARE FOR ALL IN 2009!
Today in Peterborough (4:30pm) and Rindge (6:30pm)
Click here for today's Vigils for Healthcare Reform!
Every Thursday in Claremont and Keene (5pm)
Click here for Claremont and Keene's weekly vigils for Healthcare Reform!
Labor Day Rally for Healthcare in Manchester (8am)
Click here for Monday mornings special Healthcare For All Rally in Manchester
Call Jaime at 603.504.2906 or email at mailto:Jaime@wfwin.org?subject=Vigil for more information.

HA! I am so going to make you all read the "call-to-action" information for healthcare reform before you can get to what you all want, which I'm guessing, is an update regarding me.

Here it is:

I’m in the hospital.
It’s not a setback. I’m rolling through. Definitely rolling through with therapy, but I’m hanging out in the hospital.
Just a touch of septicemia that may or may not have started in my lungs and spread through out my body until eventually it hit my dual powered super mediport.
It’s up in the air whether I can keep that or not.
I love my mediport. It’s like a security blanket for cancer patients. I know I have venous access where ever I am and wherever I may go.
We’ll see since the mediport did get all red and painful (ie inflamed and infected).
That’s not usually what a friendly/safety blanket type port does.
It might have to be ousted.
For now, a nice nurse in the ER gave me EMLA cream (numbing lotion) so when people (I.E Fellows, residents, attending, & nurses etc.,etc.,etc because everyone is getting a peek) poke and prod at me I won’t feel it.
Septicemia is painful, extremely painful, until you reach a certain point. The pain is from bacteria streamlining through your body attempting to cause major vasodialation and multiorgan failure.
When you reach the point it is no longer painful, you are in big trouble. I’ve gotten to the point where it is not painful, and life is good.
Your vessels have dilated and dropped your blood pressure to nothing. Your andrenaline is running. Your endorphins have kicked in. Lots of bodily processes are trying to make you feel better.
And they do, you are extremely relaxed.
This is bad, the body is winning. You are headed for septic shock and death. Do not pass go, do not collect $200.
I started running to the ER with pain around my mediport insertion line. With a mediport there is tunneling under the skin and this is year it hurt.
Or I thought it hurt.
It’s hard to tell with all the morphine.
Then I thought it was turning red, but didn’t know if I was paranoid, I called a clean set of eyes, mom.
She said yes, it’s red.
I hadn’t spiked a fever. My heart rate hadn’t jumped. My BP hadn’t tanked. I have a whole nursing station of assessment tools.
I was looking pretty good except for the MFing red line.
Good thing I went to the ER because my heart rate did jump and my BP did drop.
A fever can’t be trusted since I’m such an immune-mess. Who the hell knows what my immune sysem is doing during this process.
At least it can inflame things.
I’ll take it.
So I buffin’ up with some Vancomycin (the end all-be all of broad spectrum antibiotics) until we can determine what bacteria was trying to get me, then I’ll be changed to another IV (maybe ceftaz? Or oral antibiotic.
If I get oral I go home.
If I don’t I stay here.
Cross those fingers.

Update From Dad

Hi To all
I got my new photo-voltaic solar electric system hitched up yesterday and I was producing electricity today!!!
I always start out with good news but really had to stretch for some today.
Hillary had chemo on Monday. She had spiked a fever and has pneumonia by Wednesday night. She is back in Dartmouth. She is in a lot of pain. She is starting to really wear her body out. She now has chemo brain. She can't remember stuff and repeats herself. She feel nauseas often. They have poked and prodded her with all kinds of tests. The medi-port line area in her chest looked to be red and swollen.
Today was a scary day!! She was looking better but we can all tell she did not have that strong Iron-will we are so used to. It seemed like the morphine wasn't even working. Nancy stayed with her all day. When Jon, Xander and I got there she told us she still wants to go the Fair this weekend.
Wow. I don't see that happening but she has surprised me before.We just hope the pain goes away and she can recover. Vic, Nancy, Patrick & Grace, Allen, Pierce, ( Preston soon) Heather, Jon, Xander and especially Hillary

I had one helluva night. It's amazing how quickly circumstances change. I'm all infecected all over apparently it started with a tough of something on monday and went down hill. I thought I was doing well. No temp spiked, I get chills, I'm in the hospital with a mediport infection. I just barely got this power port put into place that would be super cool, but it got infected. Not so super cool anymore. I had to go to the er at night and be evaluated. It was determined I looked like things were inflammed or becoming infectiious. I had to decide if I could tolerate red man sx to get vanco. I decided to risk it since its only a skin problem and wouldn't cause respiratory problems. We really needed to focus on the infection and possible respiratory problems.

Huffing again

I've been Huffing again. . . .

Well, actually, I've been written about on the Huffington Post.

I thought instead of "blogging," or "posting" writings at the post should be labeled "huffing."

Isn't it everybody's goal to find a socially acceptable way of "huffing?"

Check out the article and the fabulous on-line newspaper herehttp://www.huffingtonpost.com/linda-keenan/dont-worry-get-angry-hill_b_272612.html

Be sure to leave some love for Linda, the articles' author and my own PR angel

ChemoDay2

Next Step: Outsourcing Medical Care

I'm getting the urge to shop.

I can't really remember the last time I felt this need. Shopping used to be my favorite activity to make me feel better.

Well.... Second favorite.

You guess what the first is.

I'm getting back in the mode to simplify my life.

This seems to happen about every 6 months.

Shopping doesn’t quite fit in with the whole simplification thing, but hey, I am a woman. We can always justify shopping.

I don't think now is the time for me to put energy into patients as partners.

Everyone agrees starting a 501(C) requires life dedication.

I need all my energy to heal.

I want energy for my family.

I also need to have fight left in me so my needs are met.

Getting treated for cancer should not be so hard.

A recording from medco called to confirm the receipt of my scripts.

I was reminded by the monotone female to get my scripts in a timely fashion next time.

Me? This is my job? When I've been forced to use a service that is inconvenient due to costs?

Too much extra stress.

I would have given them an earful, but I don't get the respect of having a person call.

What exactly is my money going to?

My guess is profits since having an actual person call and talk to patients could severely cut into earnings. Donna from Boston has a point, many other countries say Americans treat their animals better than their poor. Here is one case and point.

Want to know what countries say this? Ecuador, Guatemala, Mexico, Cuba, Canada to name a few.

Not the countries you were thinking?

Yes, the countries we snub as underdeveloped are looking down their noses at our health care.

They have every right to, we spend more than any industrialized country on care but the quality is equal or subpar to the above stated countries.

We have an infant mortality rate that rivals the third world.

The US is missing a huge opportunity to regain its Superpower status by failing to create the best system in the world.

It’s no wonder with problems like I experience medicine is getting outsourced too.

I was headed to Germany. I’ve heard of others who go to India or Barbados.

It’s cheaper to vacation in the Caribbean and receive treatment than it is to solely receive treatment.

Ugh.

Medco Phone Call

Good News. . . .

Good news.

It's 6 hours post chemo and I am awake. I'm thinking. I'm not curled up in a ball throwing up. 

The bad news. 

I'm thinking. 

I thought the fear of the unknown was the scariest aspect of this disease. Now I think so few get to the point of knowing the truth it's the general consesus fear of the unknown is the worst.

This is part of the theory of my writing.

 What am I saying? I'm scared, very scared.

 Another blogosphere hodger, Adrienne, is in the hospital after suffering lung failure.

Luckily, she"s recovering, but what if this happens to me again? Will I be treated in time? 

Adrienne has had hodgkin's for eleven years now, since the age of nine. I want to know how she's made it that long. She's also treated by mysterious dr O.

 I'm really not interested in extending my clinical care team, I just want to perfect it. 

I fear the holes in care where I call and can't be seen in a clinic due to the fact my provider is out. I always thought this was the reason for a team. I don't want to struggle and cry to receive care I know I need. I know how people die trying to access care. I don't want to be one of those tragedies. 

At the same time, I'm too tired. I don't like the desperate, scared, nervous person this disease has made me, and I'm the lucky one. I have a town full of primary care providers who will always care for me if I'm "dropped."

Somebody needs to. I didn't know how much this past year had traumatized me. Navigating the health care system is like navigating through dante"s circles of hell. What's worse is I know I am in a privileged position where I am cared for by my providers more than most. 

Scarier than my situation, where does this leave everybody else?

I'm scared to tears again, and I know I'm just one suffering from our sick system.