Someone called my room today looking for a “Shirley St.Hilaire.”
I don’t know if this person actually exists and had resided in room 108 before, but it would be quite the maiming of “Hillary St.Pierre” if I was who she was looking for.
This was only one of the things I experienced bright and early in the morning.
I also had two blood draws, vital signs, a visit from Ms. Savage, and my parents came to see me.
On Saturday X had a great time at the fair. When he came to visit he showed me his spoils of a day spent hanging out with Nana and Pepere: two webkins, Xanda the Panda and Izzy, a Gecko.
You don’t realize how much advertisements guide thinking in children until your 6 year old comes to you with a gecko and calls it a Geiko.
Saturday actually went so well and Xander was so happy that he didn’t even ask to call me.
As difficult as this is for me as a mother to know that he is off in the world having so much fun he doesn’t miss me, I know this is the goal we have been working for.
The goal of all parents is to see that their children can survive and thrive happily in the world without them.
I never thought I would have to push for this goal by the time he was 6 due to cancer.
It’s hard to be separated from X. He is still so young and I want to be with him everyday to love and hold him, but love is doing what is best for the person.
Having X come to see my day in and day out at the hospital is not in his best interest. He needs to grow and thrive the best he can and enjoy his childhood, even if that means I’m left alone at the hospital missing out on events.
When he comes home he catches me up via the videos or the pictures that were taken and he gives me long updates regarding his day.
I’m glad we’ve finally made it to a point where he can leave me knowing I am in the hospital and go on to have a great day. I’m glad I have made it to the point where I let him.
I’ve surprised myself with how far I have advanced psychologically in regards to dealing with my own mortality.
I had a reaction to the doxil the first time it was infused that resulted in hallucinations and then severe backpain. It was so sudden and excruciating that I thought I may die, but I wasn’t scared.
The nurses that were all surrounding me were. My Dad and Jill were scared too. But not me.
At the beginning of last week when I started to feel so terrible due to my pneumonia, I became depressed.
I’ve had pneumonia for years and along with coughing, wheezing, difficulty breathing comes tears and depression. I don’t know why. They have always gone hand in hand.
I was sad thinking maybe I had completed my work on earth and that it was time for me to go. I was devastated that I would be leaving my family.
I was scrambling around to try to introduce key people to other key people while wondering if anybody could, or would even want to, make sense of my works.
This was what I was doing to prepare to die.
Does anybody see what’s missing? I was never scared. Fear was not in the equation.
I’m blessed to have had the years I have to process my life and determine it was a life worth living and that I have no regets. I can die peacefully when the time comes, though I don’t think it’s coming for a very long time.
I’d say about 80 years or so.
Keep praying. God will heal me on his own time. There is a master plan for this.
While you’re praying to save my life, I am praying for reform so no other person will have to suffer the stress and indignities of the system alongside any chronic, disabling, or life threatening exist.
I’m praying eventually discrimination against the sick will end, specifically that insurance companies will no longer be allowed to use a pre-existing condition as a cause for non-payment or have the ability to purge you from the system when you become ill and require too much money to care for.
These actions are discriminatory against the sick. I pray that this stops.
I also pray that our health system stops discriminating against the poor by allowing insurers to make the cost of buying care beyond the means of a middle class family. The message I’m getting from this practice is I just don’t make enough money to deserve to live a healthy life.
For this to happen I think there needs to be a change in the social view of health care reform from something that is tedious and imposing to an huge opportunity to increase our gross domestic product and regain our stature in the world.
It saddens me that an attempt to improve our society is causing such a resounding distress among our citizens.
I think changing the view would require a few simple steps in changing the presentation of the process.
First, I don’t think Americans should be required to have health insurance. This is contributing to the idea that the government is controlling health care, that it will be “socialized” and the government will have a dictator type role in what we receive.
Forcing everybody to have health insurance should go. We have freedoms in America and that includes the freedom to make stupid decisions. If someone doesn’t want affordable health care, they can go without it.
This is at least an improvement from what is happening now, since insurance is UNAFFORDABLE in its current state.
Let me remind you that in NH the cost of health care coverage for a family of three runs about $24,000 a year. This is for the most basic plan and comes with a $6000 deductible.
To make affording what insurance becomes available (whether it be a cooperative or public option), people should have education regarding health savings accounts which allows you to use money that is never submitted to taxation for health care costs.
Education for the implementation of any reform ideas should be done by the government but at a very grassroots level across the nation.
Everywhere the candidates stopped along the campaign trail people should be available to educate our citizens on the new changes in language that is understood by all.
The days of using verbose legalese that no person can understand to confuse people allowing them to be easily guided into spending more for less is gone.
Reform ideas should be clear and concise. The options should be easily understood and counselors should be available to help.
Where is this money coming from?
I don’t know about the whole nation, but a project to bring several gambling sites to NH would be a great start.
This money could be used towards creating a “public option” for insurance or used to buy in individuals and small businesses into a cooperative insurance alongside state workers to achieve the lowest possible price of insuring people.
The more who join the lower the group rate.
But who knows, I’m just a young, sickly, has-been nurse and professional cancer patient.
I don’t know if anybody will ever use my ideas, but I’m sure as hell going to keep sending them out into cyberspace.
Something, someday, has to give.
Baldies' Blog began originally in the UK by a 26 year old journalist with a blood cancer on a mission to inform the world about bone marrow donation.
He has since died, and I took on the cause of making cancer care more transparent for everybody.
Cancer is a disease that will touch everybody through diagnosis or affiliation: 1 in 2 men will be diagnosed and 1 in 3 woman will hear those words, "You Have Cancer."
I invite you to read how I feel along my journey and
how I am continuing to live a full life alongside my Hodgkin's lymphoma, with me controlling my cancer, not my cancer controlling me.
I hope that "Baldies' Blog" will prepare you to handle whatever life sends you, but especially if it's the message, "You Have Cancer."