I hate bad winters. 

Winter knows and it hates me too. 

The probems started along with the snowfall extravaganzaa that still shows no sign of stopping. 

Tuesday came and I fell going to start my car on the sheet of ice formerly known as my stairs. 

I fell again stepping off the stairs on Thursday. I stepped into knee deep snow, rolling my ankle and collapsing into the bitter wetness. 

Wearing knee high boots is not all fashion. It's to keep the snow out off of your feet. 

At that point I'd had it. The weather had declared war on me and I was going to fight back. 

I had x try to shovel the stairs but it was too late. I had to call J, who's been working obsessively, to shovel and salt. 

Then, on my Friday morning, after I dropped the kids off at school,  I was driven off the road by a kamikaze plow truck. 

Everybody who stopped to help treated my like a stupid woman driver (Do you have 4-wheel drive? Is it on?). 

I Tried pointing to the plow mark halfway through my lane but no one cared. It took dad, pat, a truck and a winch to get me out. 

Then following morning, in my frenzied attempt to escape my cabin fever, I drove to my parent's without unfreezing the windshield (either inside or out), misjudged the turn and drove right into the snow getting me stuck for the 2nd time. 

Again, my parents and x came to my rescue with shovels and muscles. 

I'm feeling better today (even though it's -12) after our escape to Natick and the mall. 

I had to get away, far away, to a landscape I rarely see. The halls are like catwalks there with a strict legging knee boot dress code. I finally got some shopping out of my system (full outfits for under $80, I love the post christmas sales), but you woldnt believe how disrespectful and rude people can be to a young woman in a wheelchair. 

That's a whole other post. Today, I'm off to chemo. 

Dreams

This is what $150 every 3 weeks will by you in medication.
Kineret is also my cure for GVHD of the eye, which can damage
the cornea and lead to blindness.

I always dreamed of becoming a powerful advocate/writer/expert, someone who through the ages will be remembered as playing a pivotal role in altering the course of history for the better. Think Florence Nightingale, Mya Angelou, Oprah Winfrey, the writer of the Feminine Mystique, MLK, any and all the creators of social movements and new cultural thought processes. 

If I were to be remembered in this way, I would have accomplished my lifetime goal of leaving the world better when I left it than when I came in. My life would be complete.

Of course, if I were "remembered" this way I wouldn't know whether I led a successful life or not. I wouldn't be around to see the results.

 I have ideas about how to meet the aforementioned goal, Pillars to prove my successes, Dreams and images of testifying before congress and the senate, Meeting with the president to highlight the plight of insured patients, Hosting rallies telling my story and the stories of others that can't tell themselves.

Sterling Silver and Geode Inspirational Necklace.
 All jewelry Available for purchase: hill.stpierre@gmail.com
Full Catalog to come.

 These are all milestones I hoped to reach in accomplishing my ultimate goal of making the world better for the future. 

I've come close, but ultimately, I was not selected to testify before the senate on behalf of the ACS. 

I'm so disappointed. I'm crushed. 

They've "found a different patient," which is a polite way of saying, "You're not right for us."

My medical marijauna use is too scandalous. I'm SO frustrated. I waited YEARS to comment publicly on my stance and just as long to experiment with the new medications available only to write about the experience the day before my testimony and have me disqualified as a spokesperson.

DAMMIT!

Floating Pearl Necklace.  Also available as a bracelet  or with pink&white pearls. Customizable.

But of course, truth be told, I was all ready feeling like I needed to edit myself. I finally started creating my very own cartoons and hadn't posted them yet. Now I won't hesitate.

Okay, maybe I will because the server isn't cooperating.

You'd never heard of these goals, these dreams, because I have never said them before. They've been kept secret. 

Like so many others, I've kept my wildest hopes and dreams hidden for fear of failure. 

You can't fail at dreams you don't acknowledge, But what fun is it to dream if you can't tell anybody because you fear failure?  It takes the fun out of imagining your wildest dreams. 

At what point does this happen, that dreams become secrets due to fear of failure? Childhood is full of all sorts of dreams. I'd say up through college.

I know when I stopped talking about my dreams. I stopped when I realized my cancer may not be curable.

I still have more dreams.

My daily oral morning medications. This does not include
"As needed" meds, PM meds, shots, or drops. We spend $150
minimum monthly in med co-pays.

 I dream of being a successful, pulitzer prize winning investigative journalist with a best seller on The New York Times list.

 It could happen.

 I dream of people loving my artistic creations and starting my own store called "Uber-local" or some other catchy vogue name. I'd create an artist co-op where we all pay for our space and share duties. It'd have refurnished/antique furniture, local goods such as food, art, hand maid furniture, vintage clothing or redesigned, all laid out like a second hand IKEA.

I'd be a mini-mogul by now. I'd be a nurse practitioner with a share in my private practice. I'd own investment properties.

 But instead, I'm 28 and still thinking up ways to hustle income to keep my family comfortable. 

At 18, I was in the fast lane towards the american dream.

 Ten years later my american dream is threatened daily, and I've moved on from dreaming of opening my own health clinic as a nurse practitioner to selling jewelry and begging for donations (hint, hint).

 Our income appears sufficient but our expenses are outragious. 

Inspirational "honesty & charity" Suede and agate Necklace  with sterling silver findings. Orange supports leukemia. 

How many years will I have to spend the entirety of both my and my son's social security on health care? 

I feel like I've been treading water forever. I feel like I've been hanging on by my nails, gritting my teeth, just trying to keep myself together.

 I need a break. I don't know how much more I can take without one. 

Talk about cabin fever, and I was run off the road by a kamikaze state plow taking up half my side of the road.

Thank goodness for my Dad and Brother who pulled me out with their winch.

Say It Loud

The Vote to repeal The Affordable Care Act has passed.


It is a sad day for all.


But all is not lost, I'm hoping to be selected as a spokesperson on behalf of myself and The American Cancer Society to appear before the senate in Washington DC next week to tell my personal story.


I'm currently in the running!


Everybody please cross your fingers, your legs or your eyes and pray that I'll be able to represent those of us who fear both bankruptcy and our life threatening illness. 


And FYI, just for giggles, here are some more health care facts:


Average health insurance premiums for an American family totaled $13,770 a year in 2010. And the cost of health insurance has jumped 131 percent in the last ten years.


According to the Congressional Budget Office, When fully implemented, the health law will save the average family of four between $2,265 and $9,794 a year on insurance costs, depending on their income. The CBO estimates that repealing the Affordable Care Act would add another $230 billion in debt over the next ten years. 


When fully implemented, the health law will save the average family of four between $2,265 and $9,794 a year on insurance costs, depending on their income.

However, the new law is barely a year old and all ready under fire. It's clear our healthcare system is subpar. It is the most expensive in the world and ranks us 50th in quality of care. 

To put it in terms more likely to understand (I know I can always relate to shopping), It's like buying a designer Kara coat for $300 and going next door only to find a Chanel coat, the version that Kara knocked off, for $150. 

The better version is less expensive and higher quality elsewhere, but where in the above scenario you can run back and make an exchange, Americans are not only shrugging their shoulders and dismissing the offense but they are fighting to keep their expensive knock off.

I don't understand. 

Why I Relay

"I wish that I could say that about you." Xander whispered to me, as he snuggled closer during our first Relay for Life meeting yesterday night.

"What's that, Bud?" I asked, all ready suspecting the answer based on what the motivational video on "Why I Relay" had said.

He looked up at me with big sad eyes and said, "A cancer survivor."


"I know." I whispered, in a throaty, don't-let-me-cry-in-front-of-all-these-people voice.

During the meeting, a discussion began regarding the worst words a person could possibly hear. Often, the vote says the three words, "You have cancer" are the most scary and life defining.

Several parents of of cancer patients and survivors, mine included, begged to differ

I think there is a group that would fight them on those worst three words, if they were strong enough, verbal enough, aware enough, or just plain old enough, and that would be the children of cancer patients.

I can't imagine the horror of hearing, "Your mom has cancer." at a time when you see your mother as an invincible, all-knowing super human responsible for your safety and security.

How hopeless, how helpless and vulnerable can one person feel and for how long? And as a child, how can they find a way to empower themselves? How can they exert some control over an uncontrollable situation when they're only in grade school?

Well, the can fight. They can punch, kick, and scream. They can go to therapy, have behavioral interventionists and long talks with family members. You can read all the books in the world and bring them to selected appointments, but none of these allows them to exert control.

What has seemed to empower them, as it has empowered me, is the possibility of changing things in the future by raising money for a cure, by advocating, by writing, or even by sharing their story with others in the same situation.

And that's why we braved the NH single digit temperature and newly fallen snice (that's snow and ice) to go to The American Cancer Society Relay for Life Kick-Off event at Pizza Hut.

Believe it or not, this one wasn't my idea.

I've dabbled with the Relay for the past couple years. First showing up in thanks and walking a couple laps and then joining an actual team, Sharon's Hometown Fighter's, last year.

I went to the Relay with Xander, Jon, and my father. I could barely walk one lap around a soccer field I once would run hours of sprints around.

Other survivors lapped me as I'd stop to catch my breath. I can't remember if they brought me a chair or not. J looked like he had me on a leash holding my oxygen. I made sure to keep him out of the pictures.

But what Xander remembers is a huge party in celebration of some of his favorite people. There was a huge picture of Andy and a booth dedicated to childhood leukemia. He played soccer with Andy's brother, Robby, and other kids brought by their parents.

In Xander's mind, this changed the face of the relay. It was no longer a charity event for grown-ups. This one was made for the kids.

It was Alexis that brought up the relay a couple weeks ago. Her fifth grade class had voted on a charitable event that they'd like to know more about. They picked ACS's Relay for Life.

I don't know how much control she had in the decision making, but the next time I saw her she excitedly told me about how her and her friends would be participating in this year's Relay and that Grandpa was going to make the booth.

I'd forgotten about her announcement until I saw a sign on Washington announcing yesterday's kick-off. So off we went, the entire extended family: Jon, Xander and I, my parents, Jon's parents, Rev & Becky and Alexis.

We had no team affiliation and really no idea what we were about to get into, but I knew I made the right decision to stay up past my bedtime when we hopped in the car and X announces, "Mom, this is a really important meeting."


He's watched me through the years use advocating as a way to show my strength in the face of adversity in hopes of making the future better for others, especially X and Lex. I'm so excited that they both took the initiative to choose this as a cause.

It was clear by introductions that we would be starting our own team with Lexi and Xander as Co-Captains. We are now, officially, The White Tigers.

I haven't heard Xander as excited as he was last night picking out who would be on his team. Relay Teams have a 15 person maximum and then they need to be split.

We've decided that we will all share a booth even if we have more than 15 teammates and we'll alter the names accordingly, such as White Tiger Mamas, White Tiger Lilies, White Tiger Cubs, etc., etc.

Lexi is more quietly excited and confident. She looked so mature taking the captain's paperwork and reviewing it alongside the Chairperson. I haven't heard her list of friends yet, but I do know the whole fifth grade at Bluff has been put on notice by their Librarian. I hope they take their interest to the next level with fundraising activities and joining us in June.

Lexi is in charge of paperwork and filing. Xander is in charge of fundraising. Both will be actively recruiting. Watch out "Danielle and the kids," Logan, Andy, Gabe F. and Mason. You are all going to be approached by X.

Both kids stated they wanted to join the relay to support me, in hopes of finding a cure. I'm excited they've found an outlet to exert power over this horrible disease that has threatened to take me from them during their childhood. I can't wait to see what happens and who joins us. I'll have more information later.


 Until then everybody Keep June 25th and 26th open. All you have to raise is $100 and walk a couple laps to participate.

Health Care's Sick Cycle

Ugh, today is the federal vote that will attempt to repeal the new health care law, The Affordable Healthcare Act or ACA.

I'm stressed. I lost sleep over it last night.

Who knew the government's actions could affect  me, one person, so much? I never imagined in my life, as an American citizen, that a vote by my representative's could be the deciding factor between financial survival and bankruptcy, security or chaos, healthy or not, medications or no, treatment or death.

I really think when the constitution states we have "The right to life, liberty and the pursuit of happiness" that includes a basic safety net of health care.

It's as simple as Maslow's heirarchy of needs, without basic needs being met for survival, such as life saving care, a person can not transcend to experience psychological needs such as the pursuit of happiness.

And as far as  I know, Maslow's Heirarchy of Needs is the most scientific quantifiable ladder of psychological improvement accepted in the US.

Disagree? Go ask your therapist.

I can at least be thankful that most all of us agree that our current health care system is in drastic need of change.

The facts are clear:

The USA has the third highest public healthcare expenditure per capita. More money per person is spent on health care in the USA than in any other nation in the world,^[2][3] and a greater percentage of total income in the nation is spent on health care in the USA than in any United Nations member state except for East Timor.^[3] 
OR
 We are the most expensive system in the world.


And Here is what we get for the cost:


Life Expectancy is ranked 50th in the world.

We are  41st in Infant mortality.
The USA is ranked 72nd (among the 150 United Nations Members) in overall quality of care. Cuba is 37th. 
and
Half of all bankruptcies filed are due to medical debt. 


We are paying the most for a failing system? And why is it failing?





Where the issue seems to lie in moving forward is the implementation and product, and this is likely because people are envisioning our current health care system with the future laws.

We can only hope that the best of what exists in health care remains and the rest is left behind. We've started this movement as a country by studying evidence-based best practices for quality care.

Hospitals have been working for years on campaigns such as "Save 100,000 Lives" to prevent medical errors and to streamline a process which allows patients to easily access care of their choosing.

What has been a major obstacle is the disjunction between health care providers/facility, reimbursement companies, and the government (which also works as a reimbursement company through Mediaid and medicare).

Hospitals are forced to hire more and more people to plow through red tape for monetary reimbursement that often does not cover the full cost of treatment and taking away from securing health care staff, which make each patient experience safe.

And what happens to the hospital's version of the medicare donut hole? The middle of "the sick cycle."

Well, they're stuck between a rock and a hard place having gotten what money they could from reimbursement and the patient. They then cost shift and write the expense off as a bad debt, placing the problem back squarely on the shoulders of tax payers.

The only ones making out here are the Insurance Companies. And whoa, do they profit.

In the midst of America's deepest economic recession in 2010, According to a report prepared by Health Care for America Now – based on annual reports filed with the Security and Exchange Commission – WellPoint Inc., UnitedHealth Group, Cigna Corp., Aetna Inc. and Humana Inc. posted combined profits of $12.2 billion, a 56% increase over calendar year 2008.

During the same period of time, the big five insurers covered 2.7 million fewer Americans.

Sounds like a good business to be in, if you're healthy, but most of us aren't. Over 50% of people report having a "pre-existing condition" that would disqualify them or increase their fees for health care coverage. 

Ugh, again, I'm getting sick just thinking about this.

Don't Repeal my Health Care!

By hillary17 | View this Toon at ToonDoo | Create your own Toon

NH Residents, please take the time to read the following protecting the new health care law and me and sign the petition for the law to remain in place at the link. Our goal is 1000signatures:

http://action.prioritiesnh.org/o/5/p/dia/action/public/?action_KEY=171

Dear Representative Bass and Representative Guinta,

Last March the historic Affordable Care Act (ACA) was signed into law, providing affordable health care for millions of Americans.  Tomorrow the U.S. House of Representatives will vote to potentially repeal the Affordable Care Act, denying millions of working Americans, business owners, and children access to health care.  

Before you vote, consider the impacts of repealing the Affordable Care Act:

1. Repealing the ACA would deny health coverage all Americans with a preexisting condition, 129 million.¹

2. For Americans on Medicare, repealing the ACA would reopen the donut hole in drug coverage and remove free access to preventative care and tests.²

3. Since March, thousands of small businesses have added health coverage for their employees.  Repeal would deny businesses incentives to offer health care to employees.³

4. Young adults 18-26 would be dropped from their parents’ health care.

5. Repealing the ACA would add $230 billion to the federal deficit.²

6. One million private sector jobs have been added since the passage of the ACA.  Repealing the ACA would increase costs for employers and workers slowing or reversing these job gains.

7. Americans don’t want repeal.  A recent Gallup polled showed only 30% of Americans strongly oppose the Affordable Care Act.⁴ 

Vote NO on repealing the Affordable Care Act.

DON’T REPEAL my health care!

Happy Re-Birthday to Me

It's my first rebirthday anniversary!
Let me translate: It was four years ago today I had my very first bone marrow transplant at Dartmouth Hitchcock Medical Center using stem cells collected from my twin sister, Heather!
I am at least four year old.
Feel free to send presents.
I remember very little, thankfully.
I was infused with the cells on what we call "day Zero" (sounds ominous doesn't it), and proceeded to spend the next two hours vomiting and violently heaving when I could no longer purge anything due to the preservatives in the cells.
These preservatives also make people smell BAD, but I don't remember that at all. That was the least of my  worries anyway.
After day 0 I don't remember anything until Day 6, and I only remember day 6 since a tornado touched down only 6 miles from my grandparents home in Lady Lakes or "The Villages" FL, exactly where my mom had taken X to escape from the family chaos of the week.
I think it took about 2 or 3 weeks until I remember anything after that. In between there is total nothingness in my memory banks. It's Probably a dissociative fugue from a trauma that included the entirety of my skin peeling off (you can see the process starting in the picture. The redness is me being burned inside out) and my entire intestinal tract sloughing out.

I try not to remember, except for the occasional flashback which is out of my control.

I think it's worse when my presence or illness gives the nurse tending to me a flashback of my transplant.
Yeah, it was that bad, but luckily, the bottom picture of Heather (forefront) and me was taken after that disaster.

Happy birthday to me.

Chemo Prep Gone Wrong

I always think I'm prepared for chemo or surgery weeks. 

I make sure the house is clean and organized. My outfits are assembled (just in case I have to, heaven forbid, change clothes). A meal with a couple days worth of left overs is prepared. The cupbards are full with easy meals and quick snacks. Any fresh fruit or veggies are cut and ready. My perscriptions are called in and full. Child care is organized.

 I do everything I can, I use all the skills I've learned through school and the past four years, but I'm never prepared.

 No amount of experience or cleaning or grocery shopping can prepare anyone for the toll and turmoil treatment brings. 

This week my visiting nurse even came in to assure everything was prepared, and still, major failure in the medication department happened, again. 

Everything I needed was ordered at the pharmacy Mon, but I told J, "No worries. Don't go today. I don't need them for a couple days.". I said this knowing I needed my synthroid for my nonfunctioning thyroid on Weds, and by need I mean I am out, my body will start to suffer. 

I'll be lethargic, cold, constipated and feel like a fat ass. 

Well, weds. It snowed. Thurs. I exhausted myself getting to Concord. The errand had slipped j's mind and I wasn't policing him. 

Now, it's sat. And I've gotten my synthroid into me. 

 I'm finally feeling semi-human. I'm not feeling like a hazy, foggy, flakey mess. I'm able to get off the couch, But barely. 

I don't know what to do with myself. I have energy to do things but not do them well. 

I'm fatigued to the point its painful. You'd think this statement would contradict the previous but the two feelings can coexist. 

I hope you read this and are confused. I hope you never have to understand the feeling by suffering or seeing it first hand. And all it takes to cause these feelings of discomfort is missing one single pill for one single nonfunctioning organ.

 I have no motivation. Chemotherapy induced fatigue is very real, and probably one of the worst side effects, because there is not a damn thing that can be done.

 Maybe its that "amotivational syndrome" people claim is brought on by smoking. 

Could my mind and body gone to pot?

 All I want to do is sleep and eat. Sleep, eat, drink, watch tv. 

If everybody in my life could just remember that by transplant standards, I'm barely two years, maybe they'd go easier on me.

 Maybe I could just go easier on myself.

I'm hoping by tomorrow (Sunday) I'll be able to do some exercise to increase my energy, and maybe even go to J's basketball game. It'll be another fabulous family sunday.