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."

Get a playlist! Standalone player Get Ringtones

Monday, September 29, 2008

Testing 1, 2, 3

video

Slideshow

THE HEALTH CARE BLACK HOLE

Isn’t this special, I thought life was good because I had my transplant postponed until Oct. 1. What happens on Oct. 1? I’ve been disabled for two full years according to the federal government, which entitles me to Medicare Part A and B for a small fee taken directly from social security. These will cover the entirety of my costs for my immunosuppressive drugs.
What’s the problem? My regular insurance company knows. Yes, Highmark Blue Cross and Blue Shield has sent me a benefits questionnaire forcing me to confess my new “windfall,” because they won’t cover a cost that medicare will.
Unfortunately, medicare won’t cover a cost that highmark will. Do you think the two will be battling out this problem between each other? No, they’re going to force it on the middle patient.
I see the health care black hole I’m about to be sucked into. The astrophysicists and first world countries can spend billions of man hours and money on creating a real black hole that will exist a nanosecond, just to see what will happen, but they can’t drag me out of my predicament.
It’s not about the money. I have Aunt B who organizes and fights my bills for me as a hobby. It’s the situation. It’s the principle. I can’t clone Aunt B to be a patient advocate for everybody in my situation. I can’t how wrong this is.

CHASE THE CAR

I didn’t want to admit I had a problem when I first became sick. I was exhausted. I thought my fatigue was a house wife secret. I was transitioning between being a college girl, girlfriend, and mom to wife, mother, and nurse. I had a house to take care of. I had meals to cook. I had an active two year old who always wanted to take long hikes and run. I had a job that was physically and emotionally demanding. I worked a lot because that is what I thought my twenties were for. I wanted to relax later. I wanted to retire early.
How did I figure out my fatigue was pathological? If anyone saw Desperate Housewives last night you saw Gabby have her chubby four year old chase her car for exercise and tell her daughter it was a game she was winning. I laughed until I cried, because about January 2006 I became too tired to take care of my son all day. I was devastated. I thought it reflected on me as a mother. If he didn’t fall asleep for nap, I would. Jon would get home and I’d be cranky. I couldn’t get dinner on the table. My house was getting cluttered (not dirty or messy because I still hate when that happens).
My favorite game to play with X became “chase the car.” He needed to run, and I couldn’t. I thought I was just working too much. I needed to sleep, so I had to wear him out somehow. I’d trained him from a young age to hike and be exceptionally energetic because I wanted a son that could keep up with me. I made a mistake. Now I couldn’t keep up with him.
So just about everyday he’d wear me out and I’d ask him if he wanted to go for a run, down the driveway, to nana’s house, it didn’t really matter. I’d hop in my car, put X on that grass, turn around, and holler out my window “ready, set, go” and we’d be off.
The difference between Gabby and I is that I have a ½ mile long driveway. X and I could do a couple lapse of chase the car without being “caught” by our neighbors. He’d get in about a mile a day. I thought this was “normal.” He was my child after all. It’s in his genes to run.
I thought this until I got caught. My husband knew I’d been doing this, he told me it was weird, but he was always telling me not to do things. Linda found me out when she was coming over for a visit one day, and I realized how my fun and games may look to an outsider. I decided to stop. I decided I probably was a little tired from my lifestyle. I didn’t think I had cancer, I thought I needed a break. I increased the amount of time he went to daycare to the days I was working and afternoons so I could get my nap in. I fixed the problem and called it good. I didn’t know what such a simple symptom would turn out to be.

I’m the Type of Girl Who. . .

I didn’t mean to get this thin. If you want me to give you diet advice, I would tell you to get cancer. I eat 3,000 calories daily. That’s minimum. I’ll eat a full pint of Ben and Jerry’s in bed and fall asleep without moving just to keep the calories.
Sometimes, I wash my clothes, pull them out of the dryer, and think, “Dammit. I’ve shrunk my clothes and will have to donate it to a kindergartener” only to put them on and realize they fit me.
I’ve had friends do my laundry only to wonder why I have little girls clothing in my house. Have I hidden a 6 year old somewhere? The last pair of pants I bought were a size 10/12. That is not in grown-up sizes.
Thank goodness Victoria’s Secret was that she liked to cater to pre-teens or else I’d be shopping in the girls section for everything.
Deep inside, I hope these issues are just good genes. Here are some other tidbits that you might not know and might not believe. I’m the type of girl who:
laughs out loud in dead silence  belongs in the hot moms club  eats full pints of Ben & Jerry’s before bed  compulsively needs to be the best  shops only clearance and thrift stores  gets the giggles weekly will stare right back if I catch you looking  thinks I’m right, no matter how wrong I am  would like to rule the world  loves tech toys  buys only fake or hot designer goods  does not think diamonds are my best friend  always wants to have fun  does not like to part with my money  needs to know how all these other people got so rich  loves people
My favorite color is aqua blue. Yes, as in Tiffany’s blue, the color of my living room walls blue, as in the color of the lymphoma cancer ribbon aqua blue. I think that coincidence is wonderful irony. I also think Tiffany’s is over rated, but Simon Pearce, my friends, is not
I would not wish my situation on ANYBODY. Nobody. But I do have a few in mind who could take my place.
And honestly, I’m getting bored with talking about myself. I am so excited to hear from everybody who is cheering me on. If you don’t know me personally, I especially enjoy your insights, and I hope you know your words and experiences can be comforting to others beyond me. If you’re confident enough to post a comment publicly, here is the process:
Underneath my blog posting, Click post a comment > In text box on right, type in Comment > choose anonymous unless you have a pre-existing gmail account> confirm posting
If you would like me to know who you are, but don’t have a gmail account, no worries, just type your name in the text box
Use your comments as a chance to relay your own stories of woe or wonder. We’re all here to support each other.

Hill's Hiding in Harlem


Thought you lost me for the weekend? You may have. Hill was hiding in Harlem again, my favorite get-a-away spot when I need to escape my responsibilities, or my entire life.
Why Harlem or the BX borough? Mostly because even if you knew exactly where I was, you wouldn’t come find me. I can hide in plain site. I can hide amid lights, music, and laughter. There are even some friends like me. I know you thought I was the only one. I know you thought more of me didn’t exist aside from Heather, but I do have some friends who could rival me in the rowdy department.
And if we decide not to be rowdy, we still have a good time. I pretend I don’t have problems. They don’t bring them up, and everybody else has no idea. This isn’t small town NH where people recognize my face, they’ve heard my situation, and even if we have a conversation that does not include the C word, I can see the sadness (or is it pity) in their eyes.
I had to get away. Far, Far, Far away so I could hear what it’s like to be a twenty-something manhattanite. I get to pretend I belong.
My girls lifestyles may not be as glamorous as the books or magazines present them to be, but they are damn close and ions away from mine.
“Did you see the colors at the shows?”
“I heard peach, metallics, silvers, and purples are in, but for next season watch out for the gradient blues and jewel tones.”
I thought peaches were for eating.
Speaking of eating, if you ever decide to patronize Jadis and have these conversations be prepared to starve. French as I am, I do not believe crackers, mini deli meats, cheese, and bottles and bottles and bottles of wine qualifies as dinner. But maybe crackers and wine are all these fabulously happy stylists, marketing executives, journalists, etc. get to eat to keep up with the vogue weight in NYC. Thanks Samneang for dragging me down the street to introduce me to authentic Cambodian cuisine.
Why am I hiding? I do have some problems I should be facing, like my impending transplant. I feel like I got a stay of execution after my rejection due to shingles earlier this month. I was able to take some time for myself and attempt to regain my perspective. Or I now have time to simply pretend I have the life I thought I would have at twenty-six.
I want to be in Manhattan discussing whether I should get this seasons purse, next seasons purse or both and by who. Chanel, Fendi, or Dolce & Gabanna can be my most difficult decision for the afternoon.
I do not have to think about the choice between having an allo or a chord transplant by who in what city at what hospital. But to compare, these treatments are the “now” procedures of hematological diseases and the doctors are the rock star celebrities of their scene.
In NY, I can get dressed up and look pretty and not hear how SURPRISINGLY good I look because nobody knows how much my insides suck and are ravaged by cancer. They just think I look good because I’m a New Yorker, and all New Yorkers know those sidewalks are actually cat walks for the next fashion week. It’s a very simple, shallow fantasy world I like to play in for a while.
Now that I’m back to reality, aka home, where people recognize me everywhere I go for the sickling I am, where I have to look around the house and determine what takes precedent because I only have FOUR DAYS to prepare for my transplant, and must pack while having the energy of a ninety year old. The hotel is booked (Nadia at DF in housing coordination is a rock star!). My clothes are washed and packed (mostly). I’ve typed the instructions for the people who will be helping my family with daycare, grocery shopping, cooking, and cleaning. Hopefully, the second try will be a charm. But now that I think about it, maybe I should have stayed hiding in New York.
Either way, I’m laying in the gutter, but at least I’m staring at the stars.

Sunday, September 28, 2008

Grey's Anatomy Has Nothing on Me


You all thought you were having fun, sitting at home on Thursday nights, checking out the drama at Seattle Grace. Well, I’m here to let you know, Grey’s Anatomy has nothing on me. Yes, the writers in Hollywood may not delve too far into the lives of patients beyond the hospital minus “Rebecca” and “Danny,” but they do have something right. Hot smart doctors are great. They are fascinating, and they are not a complete urban legend.
I used to joke that if you were going to be sick, you may as well have some fine doctors taking care of you. It’s a lot more fun to play doctor with someone who is attractive, and believe it from experience, patients could be half dead and still notice. I’ve been on both the receiving and presenting ends as nurse and patient. Maybe not half dead, but in a whole lot of pain, and it seems like you have to hit the genetic lottery to take care of me. Attractive and smart, my two favorite things, and if you can make jokes in the chemo room, it’s a bonus. Check out my case and point picture to the right.
This is Dr. G from DHMC, and believe it or not, I did not pick him to take care of me by his picture alone. He was on the list of acceptable doctors I received from a respected colleague. I picked my specialist at Dana Farber in a similar manner, by recommendation. I suggest most people in my situation ask their primary care doctors, nurses, other patients, or persons employed in the same facility about their confidence in the specialist. This can be surprisingly reassuring. Nobody to ask, see www.vitals.com to verify specialties and certifications. If you do not feel reassured by what you see, hear, or feel, a good doctor will not be offended by a second opinion. Peace of mind is priceless people.
On the subject of patient doctor trust, I read an article the other day that stated (gasp) doctors are people too! Like the celebrity pictures in “US” that shows celebrities doing “normal human things,” like grocery shopping, the author was proving, no, doctors are not demi-gods or superhuman. They are people just like us with, surprise, feelings. Here is some insight that might quell your fears.
Most people view doctors like I view mechanics. Patients often don’t have the education to question the decisions of their specialists, just like I would not know how to confirm what my mechanic is telling me is true. This causes a bit of fear among patients. I want to make it clear, most Doctors are not out to screw you for your money. They make enough. There is not some “miracle cure” somewhere in the world that they know about and are not telling you. These people dedicated years and years of their lives to fix your health problems. Most of them busted their asses and accrued hundreds of thousands of dollars, or at least tens of thousands of dollars, in debt to take care of us.
In general, people do not dedicate that much time to a cause only to turn around and refuse patients the very best treatment. Those doctors that work for insurance companies finding reasons to deny claims and make our lives difficult are an exception to the rule. Those doctors are mercenaries who have sold themselves out. There’s a special place for them you know where.
Yes, Doctors generally make some money, but not as much as our greedy wallstreet brokers, and Doctors don’t have the Fed to bail them out if they make a mistake. They have malpractice insurance at rates that could bankrupt a small private practice. Most, genuinely, want what is best for their patients. As a nurse, I gauged my effectiveness by the health and happiness of my patient, and any failure to adequately alleviate their problems was a personal failure. I think most health care professionals feel the same and are deserving of your trust.
If you are angry or frustrated with your situation, your doctors, your nurses, your lab techs, or admitting secretary’s (except a special one at Sloan) are generally not the people to take it out on. They are trying to help. Your anger is misguided and taking the path of least resistance. Take it out on your insurance companies. They are making huge profits on your suffering by denying you care. They’re taking your precious energy by making you fight with them for care you are rightfully entitled to. They are banking on you being too sick to fight and paying the bill. Post your problems here or check out http://www.nhcitizensalliance.org/programs.html (if you are a NH resident) for the correct people to complain to.
There are a few other places where I could point my finger for making navigating the health care system so difficult you need a PhD (or at least a MS because I have a BS and it’s still rough), but you’ll get to hear about those later,
At least you have me to fill the “medical drama” void you’ll feel between now and next Thurs, and as for Dr. G at DHMC, how could you NOT trust that face.

Slideshow

Saturday, September 27, 2008

The Truth Hurts

Did you know that between 2004 and 2007, Anthem Health Plans of New Hampshire's profits increased 348.5%? Members of our Truth Squad for Citizen's Health Alliance NH asked Anthem Director of Community Relations, Chris Dugan, about the Anthem practices that led to this extraordinary profit increase. For example: How many claims does a company deny to make a $98 million profit in one year?

Friday, September 26, 2008

DIGGING DEEP

The Federal Government has dug deep into their pockets recently, $900 billion deep according to Bloomberg television in the bail-outs of AIG, Freddie Mac and Fannie Mae. The American tax payers should be feeling pretty wealthy, we now all own a portion of two investment banks and an international insurer, it’s our nation that bought them, so why do I feel so broke?
The United States apparently also still has the money to spend in Iraq restoring a government and economy that we blasted into the dark ages. Uncle Sam also found a billion to send to Georgia, not the state, but a country I’ll admit I didn’t know existed until Russia decided to step into its territory. We’re looking to dig deeper now.
If you weren’t scared before, you should be now. I saw the look on George’s face when he addressed the nation earlier this week. The worried furrow brow plastered on his face made me want to attack him with botox and freeze that look off his face. Can’t he fake some confidence? Women do it all the time.
If the United States was my husband, I would separate our bank accounts. I would drag him by the ear to couples counseling. You would probably see us on the Dr. Phil show discussing our credit card debt and how it’s ruining our family. You would also see me hollering about how he’s spending all our money on exotic mistresses.
Here’s a concept I’ll call the “Arm Candy Index.” Unlike the Dow and S&P, which deal in numbers, this deals with the behaviors of our megarich men. If you were forty-fat, bald stockbroker who was chronically trying to impress all those people who picked on you in school, what would be the final budget cut as you were losing your wealth?
My guess would be your twenty-something model trophy girl. No more Tiffany’s, no more Mr. Chows, no more envious glances. The high maintenance mistresses are getting sent packing, according to several advertisements on Craigslist from these dropped bombshells, and I don’t have access to the sites specifically dealing with relationships between the wealthy and gorgeous. I am making a trip to NYC this weekend. Maybe I should do some research myself.
I've heard we need to change, and I agree, but what exactly are we changing? Before we start changing and possibly digging ourselves deeper, we need to know what exactly we want.
I know what I want. Whenever I have a problem, a major crisis, I go back to the basics.
I want Americans’ basic needs met. We have an American dream to tout to the rest of the world, but not all of our citizens have healthy food, safe housing, quality education, and first world health care. We should have these things before going around and trying to supply them to the rest of the world. This is America people.
I want to know what we would do with these businesses we’re trying to bailout. Are the American people getting the assets or would we eventually liquidate and get reimbursed? The problem is too big. Turn the abandoned houses and ghosts towns into housing for our poor and needy. Could we turn some over to non-profits to manage. On a local level, giving these properties to the poor would alleviate other social problems. It could be manned by local leaders. Participants who receive the help could be subject to stimulations, such as contributing to society through volunteering, to receive help. It’s a concept that’s been murmured for years. We are only as good as our weakest citizen. Our richest have failed us by becoming consumed by their greed. I want accountability for these businesses. Who really knows where our money went and is going?
I want health care for health care for the sick, poor, and disabled, not bailouts for the rich. I can’t possibly solve ALL our nation’s problems, so I’ll start here, since the major roadblock to universal health care has been “lack of money.” Now, obviously, this is not true, because we’re talking numbers, in trillions, to bail out the economy.
Sen. Ted Kennedy called health care a “right,” and I agree. It’s stated pretty clearly in the constitution that we all have a “right to life,” and denying life saving health care procedures for any reason other than the risks out weighing the benefits seems to be contrary to this statement.
If you don’t think this happens, work in any emergency department for a week, talk honestly with the staff, everyone knows the little dirty secret of America’s health care system. It’s time to start screaming about the injustice. If terrorists were killing 565,000 people yearly on American soil the news reports would be reeling.
Cancer is set to outpace heart disease as the nation’s largest killer. One in two men and one in three women will be diagnosed with cancer, one in four of us will die, and one in five of us will use all our savings accessing health care.
How are we going to fix this? I know my ideas may not be popular. They may sound downright un-american but they are common sense. Here are some simple suggestions from a lay person, who also happens to be a registered nurse and a professional cancer patient:
Anything that taxes the body should be taxed for healthcare. This includes cigarettes, alcohol, and fatty foods.
Increase taxes for big businesses. These numbers should be equal to the largest percentage of income that the average citizen pays. Ivy league colleges, recognizing that college can bankrupt people, have tuition based on a percentage of income that does not include non-liquid assets. I think the government could follow suit with health care.
While we’re at it, make taxes for all based upon a percentage of income. There is no reason Warren Buffet should pay less taxes proportionately than his secretary. Our health care costs are the same no matter the income, though the poorer you are the poorer your outcome is likely to be. This will not increase taxes for the poor or middle class.
Enforce a polluting penalty. If you’re disturbing our environment, and therefore our health, you’ll have to pay. Polluters increase health care costs, they should make up the difference.
Seeing as these suggestions won’t ease all the financial hurt of illness, maybe we should stop giving pharmaceutical companies sole rights to their drugs and encourage the use of cheaper generics. Profiting off illness and the misfortune of others is wrong.
We could always look at how we provide healthcare for our prisoners for solutions. Our murderers, rapists, robbers, and arsonists all get to see a licensed or registered nurse for a hang nail, but if a law abiding citizen shows up at the wrong ER with the wrong insurance for a stomach ache ( or a perforated bowel) they could be sent away.
Health care reform does not need to be all or nothing. Children and senior citizens should have universal health care provided for them. For the others that are able to work, but become ill and may not be able to afford health care, there is a theory of “In and Out Medicaid.” This insurance is based on illness and the ability to work to secure insurance and not based on assets.
This would have solved my family’s crisis of having two disabled working adults at the same time. Our family could have been placed on Medicaid, instead of paying for a COBRA, when my husband and I were both disabled.
Instead, we had to solve our problem by forcing my husband to continue to work. My husband is an aerospace engineer. Next time you step on a plane, I want you to wonder if he oversaw the production of your engine while he was hopped up on pain killers.
So there you have it. Some simple solutions for a huge problem our nation is facing today. Need evidence that this crisis is real? Keep reading. I will find others in my situation. Remember, these are real people. Help solve this problem before that real person is you.

Wednesday, September 24, 2008

Courageous Joy


I have a new theme for the day. I’m going to call it “courageous joy.” I’m sure we can all seek out those in our life who model this behavior.
My take on courageous joy would be to look at what you want in life and dive headfirst towards that goal without regard to fear, danger, judgment or failure. When you’re knocking on heaven’s door, you’re going to look back on YOUR life and your accomplishments. It’s all you. Live out loud.
I’m lucky to have led my life, mostly, without fear of judgment, danger, or failure. Okay, not always. I am going to Dartmouth to fail my pulmonary function test today. I hate that test. The results still won’t stop my inevitable transplant.
Some people who I hope will embody and live with courageous joy:
Elizabeth Edwards, who is on my list of heroes, the wife of Jon Edwards, publicly spoke out to the Detroit Press last week. She is a successful, strong woman who advocated her whole life for health care reform. It is unfortunate that she has been publicly embarrassed towards the end of a painful battle with metastasized breast cancer. She’s one of the few people I can look at and think, “Whoa, I’m really glad I’m not her.”
She can have courageous joy. Her legacy will continue. If Sen. John can revive his career, he should spend the rest of his political career attempting to attain the goals of his wife. He should dream, eat, and breathe health care reform.
I would love to speak with him. I promise to play nice. For now, I hope they are focusing on themselves.
As I become more sick, my world begins to shrink. I can focus on my best friends and the community, then my family, then only my son, then only me. The world around me ceases to exist, and I focus only on myself and my health. I am peaceful. I hope Mrs. Edwards will attain the same state of mind, her own courageous joy.
I give kudos to Christina Applegate, too. Fighting breast cancer with a recent double mastectomy, obviously in pain and still coping with her loss, then walking the red carpet next to a sea of flawlessly perky breasts must have been difficult. We better see her on the best dressed lists. She has sympathy, power, and support.
Lance Armstrong has it. The original baldie had it, but I’m hard pressed to find more examples.
I hope we can all resemble this concept in the future. Feel free to nominate those who embody courageous joy in your life. We would all love to hear their stories.
As for me, I’ll “pass” my other pre-transplant testing. The EKG, the chest X-ray, the lab results, and the echo will all be fine. I know why I need these tests. My Doctors have to be aware of my body’s structure, but it’s not going to change my treatment plan. I don’t like the inconvenience, but I’ll enjoy the trip and the people I meet anyway. That’s courageous joy people.

Tuesday, September 23, 2008

STOMP OUT CANCER


I was having a rough morning. I took my medication to get out of bed to stop my hands from shaking. My muscles and my joints ached. My shingles burned across my chest and under my arm. I wanted to tape my arm to my head to stop the rubbing.
I flew out of bed to bathe and care for X, feed him breakfast, make the lunch, get my coffee, feed the dog and the cat, run, run, run before Jenn came to pick him up. My heart was racing. I was short of breath.
Then, I snapped at Xander. He was fidgeting. His foot stuck in the lining of his wind pants. He was making jokes and smiling. I wasn’t in the mood. He couldn’t get his foot through. I couldn’t either, and I snapped.
“I’m so sorry Bud,” I told him. “I’m screwing up my son. I’m a horrible mom.” I thought.
His smile didn’t break.
“Stomp out cancer, mom.” He told me. He gave me his fierce face, and started to smile wide again. He smiled my smile.
“What?” I asked. He’d never said the word “cancer” before.
“Stomp it out.” He told me and slammed his foot on the floor. He kept smiling, and I smiled too.
I got the message. It’s going to be a good day, and thank goodness he made me laugh before he confessed he’d been spending his hot lunch money on ice cream everyday.

A Few of My Favorite Things (Sing to the Tune of the Sound of Music)


Teardrops on shoulders and whispers in kitchens
Smiling social workers and counselors who listen
Pretty wrapped presents tied up with strings
These are a few of my favorite things

Hot smart Doctors and rock star nurses
Friends and family who take care of me
These are a few of my favorite things

Comfort and style, my hospital fashion
Massages from my toes to eyelashes
Support and love that give me wings
These are a few of my favorite things

When the pain strikes
When the shots sting
When I'm feeling sad
I simply remember my favorite things
And then I don't feel so bad

Sunday, September 21, 2008

Phone Call From God


It’s been my experience that everything happens for a reason. I’m hoping, eventually, I’ll get the big picture. I’ll understand the joke. One of my favorite quotes is, “If you’re not laughing at life, you’re not getting the joke.” Sometime, I’ll look back at this and laugh, or if not, I’ll at least be amused. Or if the alternate happens, I picture death like waking up from a dream and having an epiphany. The first thought would be “Oh, now I get it.”

I received a call last night from Fr. Stan on behalf of God. Fr. Stan was wondering what many of us probably have wondered. “Why shingles, God? Hillary was all prepared to start her transplant, and she couldn’t. She has been postponed again.”

God answered, “Hillary will be a support to people in her situation. She needs more time.”

Fr. Stan could barely contain his excitement in relaying the message, and I couldn’t help but break into a huge smile listening to him.

Looking back on my life, the hard times have always had the most influence. I can look at situations I thought were terrible and smile, because I now understand the reason. For example, when I became pregnant, I thought I had made a huge mistake. I thought I would never accomplish anything. Visions of welfare and medicaid haunted me. I knew where the abortion clinic was. I kept thinking, “What if this child has the cure for cancer.” I reviewed potential adoptive parents, but ultimately, as great as they were, they were not me.

Who knew I would become infertile by twenty-three. Who knew that would be my only chance to have a child of my own. I could have frozen my eggs at the beginning of therapy, but looking back, I wouldn’t have made any other decision.

Moral of the story, there is a reason for all my suffering. I hope it is to support and inspire other people. I hope people can take my experiences and expand the good to others so no one has to suffer the physical, emotional, and financial burdens I have. Please, let me know your ideas on what can be done. I would love to hear them.

Friday, September 19, 2008

Cancer my Treatment




I had one rough day today.
I successfully washed all my clothes in hot water, packed them nicely in one garbage bag with my other necessities packed in gallon freezer bags, as specified by the transplant team, and trucked myself down to Boston. I did away with all my eco-friendly projects at home in accordance with the “no-list” which I learned about in the “no session” (the hour long talk I had with the transplant nurse about my restrictions). Some examples of my restrictions until 2009: no crowds, no going to the movies, no restaurants, no animals, no dust, no going in the basement, no people who have been exposed to illness, no fresh fruits, no fresh vegetables, no gardening, no salad bars, no sushi ever, no buffets, no leaving the room or house without gloves and a mask, no mold, no plants, no, no, no, no, no.
I had tossed the compost bin, turned in the recycling, and taken the garbage to the dump. I had made arrangements for Xander. My family had made a schedule of who has going to be with me when. My son was prepared for my absence. Jon had scheduled the professional cleaning that had to be done prior to my safe return.
I was prepared. It was go time. My game face was on.
Then, surprise! The little rash on my chest that I swore, I hoped, I prayed was just an allergic reaction to my amoxicillin, was shingles.
“I really wanted it to be an allergic reaction.” I stammered to my doctor, pouting. “My body hates me.”
I knew it probably wasn’t an allergy somewhere inside my head, but I was in denial.
Denial is a strong coping mechanism I’ve never experienced before. It’s not my style. I’m straight forward, but I couldn’t let anything postpone my treatment. Everything was prepared. I was ready and in remission. I don’t have other therapy options to keep me in remission prior to transplant. Delays could cause a repeat of the problems with my last transplant.
Last time, I went 6 weeks without chemotherapy prior to my transplant, and when the surgeon did an ultrasound of my chest for my hickman line, she found tumors.
We canceled, or cancered, the treatment for three more weeks. Just like I have cancered my education. I have cancered my career. I’ve cancered my future children. I’ve cancered my roles as nurse, wife, and mother.
Punny, isn’t it?
I have three more weeks of anxiety and anticipation or six full weeks without chemotherapy.
This was cause for some major retail therapy. We stopped at the mall on the way home. I wondered aimlessly. A friend offered to buy me an outfit to improve my mood. I couldn’t find anything I wanted. I definitely have problems if I can’t find anything to shop for.
Really, I want a new immune system that is not trying to kill me.
Xander, however, was ecstatic I was home, and I showed up with pizza. Life is good in his world, so life is okay in mine. I get a couple more weeks to have some fun. I get to drive him to school in the morning and walk him in with the other parents.
I’m going to take today to throw myself a pity party, a full throttle pity party, Ben & Jerry’s, Maury Pavich, and Dr. Phil, because those people have problems. Then I’m going to get over it.
I’m going to enjoy my newfound free-time. I might take a trip to New York for some reminiscent girl time. I’ll play with X. I’ll coach some of soccer season. My sister is coming to town. We’ll go to the movies, shopping, and eat out. This could not be so bad. I’ll train my brain again. I cancervive this (you didn’t think I was done with the puns did you?)So watch out now, I’m back.

Wednesday, September 17, 2008

Songs


Slideshow

Tic Toc Tic Toc


Tic toc tic toc, tomorrow is the big day. I will be heading to Boston to start my transplant tomorrow Sept. 18 2008. Dana Farber found me as close a match as possible: a 26 year old female from Europe. That is all I get to know.
My mother is voting for a Scandinavian, since my profile was more similar to hers than my fathers. I heard, however, that Scandinavians are “morally loose” (thanks doc). So if after my transplant, I go a little wild (bad news for my husband, good news for the other guys) you can all be assured that it’s caused by the theoretical “cellular memory” that’s been transplanted into me.
I have had some episodes of explosive, irrational anger (a la Heather) since my first transplant so hopefully this girl can tone that down in me a bit.
On a serious note, I’ve looked forward to this time like doomsday since March. I try to remember that the rain always looks worse from the outside. When you step into it, the rain is usually not the downpour you expect. It’s not looking so bad today.
I’d like to get this process done with so I can go on with my life. Some goals of mine that might surprise you, I want to be the alpha mom and raise children who wouldn’t otherwise have the lifestyle I could provide. I want to be the stepford wife and wait on other people instead of them waiting on me (I could be Hillary Stepford instead of Hillary Ford, a new version of combining our names Saint and Ford ). I want to cook wings and chili for poker night and game days.
I don’t think these goals are a drastic step away from being a successful business woman and a millionaire by thirty (except I’ll now have to pay off some debts first).
I now have other fears for my future. I’m afraid I may not survive. I want my life to matter. I’m afraid I’m running out of time.
I was irritable for a long time about this possibility. I want to be okay with any outcome. I don’t want my last emotions to be fear and sadness.
I realize my anger reaction was not benefitting anybody, and I needed to enjoy my time with friends and family. I’ve had a lot of fun in these past couple weeks, but I don’t expect it to stop. I won’t be losing my spunk and personality. I’m a one woman party, and I’m taking on the road to Boston. Keep me in your prayers. Thanks for your love and support.

Tuesday, September 16, 2008

Catastrophe today

Catastrophe today, my dog found the rotten, raw meat my dad dumped in the woods when he bought a new freezer. Do you want to guess what happened?
She had explosive diarrhea starting halfway down the stairs to the second floor, in the foyer, and out the front door. My genius german shepard did manage to open the front door, but I’d think she was smarter if she could make it out the door before the accident.
I scrubbed for an hour and a half, huffing and puffing, without even reaching the mess at the stairs before deciding this was a mess for a professional. I started frantically calling cleaners. “No appointments for a week,” I heard. Another answering machine, “Hi, this is Hillary St.P. My dog had explosive diarrhea on my carpet, I was hoping you had an appointment today. Call me back.”
Art’s Cleaning Service showed up at 3pm. I never wanted to plant a big juicy kiss on a cleaner so badly. They rounded the corner and said, “Oh, your DOG had explosive diarrhea.” Apparently, in my haste, they were expecting a LORI whose DAD had explosive diarrhea down the stairs.
Oops. Next time I’ll try to not get so excited and speak clearly. And you didn't think I had normal problems too :)

How to Guide to Fighting For Health Care Reimbursement


Isn’t it ironic. I get medicare!! Two and a half years of justifiable illness, and I’m eligible for medicare part A & B. Only downside, it starts in Oct. 2008, after my transplant. Ha! Go figure. Of course, there are still benefits.
I’ve had a long hard fight with my cancer, but alongside my health struggles came the inevitable fights with my health insurance company. I was going to write about how to fend off the bills, but thankfully, someone has done it for me. Check out Sue Redfearn’s Nine Secrets Health Insurance Companies Don’t Want you to know at http://living.health.com/2008/03/07/nine-secrets-health-insurers-dont-want-you-to-know/
In the past year, I have unknowingly over paid $750 dollars in bills that should have rightfully been covered by my insurance. This is money I now know about. Once that money is gone, it won’t come back. Over the past two and a half years, every PET scan has been accepted and then rejected equaling over $60,000 in charges (Twenty PET scans at $3,000 a piece). Fight! Do not pay.
Why the discrepancy? The health insurance industry is a for-profit industry. Yes, some fat cat business person is profiting off of our suffering. You can thank former Pres. Nixon for this idea. Hospitals are not for profit.
How can a not for profit pay a for profit industry? Hospitals try the path of least resistance, passing the difference in cost or the refusal of payment on to the patient. The best suggestion to combat this, don’t pay until you are sure you owe. Work out any payment plan with the billing department. Communicate and try to be nice when you do it. Twenty dollars a month will keep you out of collections and in treatment while the details are worked out. This $20 is tax deductable, and the remaining balance is at 0% interest or same as cash. Also, hospitals can write off bad debt payments. The rural hospital where I was formally employed had under twenty beds, but donated over one million dollars in health care to the community yearly.
Be clear, the hospital is not the bad guy in this. The struggles with the insurance companies force hospitals to hire more full time personnel to fight on your behalf; this causes health insurance costs to rise. Medical equipment is also a for profit industry dumping on the not-for profit hospitals. These along with other factors causes health care costs to rise at a rate 3x that of inflation. Inflation rose 13% from March to April in 2008. Do the math, health care costs will rise over 40% this year. And you thought the rising cost of oil and food was scary.
Our health care industry is headed for implosion. It is the next oil crises or housing bubble, and it’s coming soon as baby boomers age, the nursing shortage increases, and the insurance companies seek bigger profit from our health crises. It should be the top of the priority list for the upcoming presidential race, but it’s not getting any attention. Is it not controversial (or cancerversial) enough? Force the issue people. Some suggestions for reform will be coming soon.

Monday, September 15, 2008

Slideshow

Ideas for sick parents

After just four days in kindergarten, X was diagnosed with Strep throat. Four days! I had only kept him home because he seemed a little sick and I wanted one last opportunity to do some super mothering. I wanted him to know that he would always be taken care of, and that seems to be done best by letting him be the sick child for the day, even if he is not. He gets to sleep in mom and dad’s bed. I pile on pillows and comforters. He gets to control the remote. He gets to drink all the fluids he wants. I bring him food in bed on a tray. When he doesn’t need anything, I lie beside him, snuggle and read. That is super mothering TLC. Except, he was really sick this day, and oddly enough, he enjoyed it. Our child is not the sickest in our family, I am, then my husband, and then him. Obviously, this causes severe anxiety. I can’t begin to think what his imagination has come up with, but I’m sure some of it is the scariest truth, that he could become an orphan. It’s become clear, my family has been diagnosed with cancer. My community has been diagnosed with cancer. But today, I want to tell you how my son has been affected by cancer, and how my husband and I have rolled with the punches to help him cope with our disease. It’s theorized up to 10% of what is learned is discovered in the womb. If this theory is correct, Xander is educated in health assessment, pharmacology, pathophysiology, and microbiology. If this theory is incorrect, he still has a broad medical education for a five year old. At three, when I was diagnosed, my husband and I decided not to bother him with details. We felt my disease would be in remission in six months. We were hoping Xander would never remember. Since things have not turned out the way we planned, and my cancer turned into a battle lasting years, we starting buying books on the subject. When none of the books fit my quality criteria, I wrote my own to open discussion. When he started to exhibit separation anxiety, I hired a child therapist. When the therapist did not live up to my standards, I fired her, and then another one, and another one. Oops. Instead we opted to surround ourselves with friends and family who are enjoyable and reliable. We are very blessed. I call these people my “framily” or my friends who are family. These are the people who grocery shop for us, who clean our house, who call to check in, who take Xander when we need a break or he needs a distraction. These people are reliable and stable, and that is what Xander needs that we can not provide. My husband and I have also gotten creative. We purchased a dry erase calendar and wrote down my appointments and when I could expect to be hospitalized. The scheduling was effective, until side effects started to send me to the hospital unexpectedly. Then we called in the recruits to distract him. We bought him toys at the hospital and allowed him to run around like a maniac on the children’s floor so he could associate the hospital with a feeling of safety and well being. We found the outdoor playground. My family will take him on fun outings, like to the children’s museum or Red Sox games, so he can associate Boston with happiness as well. We role played how mommy was feeling and how she would be taken care of with his dinosaurs and super heroes. We made up long elaborate plays with alternate endings. I explained my medical equipment. I allowed him to touch it under supervision. I also allowed Xander to help with my care when he was able. Tasks such as bringing me water or pretending to cook me meals or wiping down countertops with wipes helped him feel empowered in protecting me. He turned into a professional hand washer. We did eventual find some effective books, such as “I know I caused this,” which deals with the narcissistic magical thinking that of his age group. “Sir Chemo” and “I’m Having a Bone Marrow Transplant” are both great interactive resources that children can write in and color, like a young child diary. Xander has also significantly responded to pictures. We have used children’s anatomy books like “Funny Bones and other Body Parts.” We’ve shown him my PET scans and my CTs outlining the difference between what is normal and what is cancerous. At four, we decided to have him participate in my medical appointments under the theory that his imagination was probably scarier than the truth. He helped put stickers on my body when I was getting measured for radiation. He viewed the machine before my treatment, then he was never interested again, which was our ultimate goal. We’ve also found that just like adults, Xander needs friends he can rely on and talk to. This is difficult at this age, but we’ve found the children of our close friends have been a wonderful source of support. We’ve spoken to our friends about our situation. We have had an open dialogue and they in turn have had an open dialogue with their children. These children can then support our son to the best of our ability. My husband, who could not be in two places to provide support, opted to stay with Xander. He is the rock in the family. My parents also take a very active role. They have made their house a second home so moving Xander when I am in isolation has not been an issue. It’s a blessing if people have these options, I understand many do not. The best advice I can give is kids are resilient, just do the best you can. As far as school goes, I contacted the school nurse to notify me immediately is strep, foot and mouth, etc. are going around. I requested a note be sent home to parents reminding them that children should not be sent to school with a fever. The request was denied, but the class did do a review on germs. It’s the best that can be done. If anyone has other suggestions for coping with the affects of parental illness on a child, please comment, we would all like to know.

Sunday, September 14, 2008

I sold my husband for health insurance



I sold my husband for health care coverage. I know what you’re thinking. I’m being extreme. Before you judge, let’s do some math. Let’s look at the real price of health care.
In April 2006, when I was diagnosed, I had short term, long term, and life insurance. My husband held the health care policy. I was making $65,000 yearly as an RN with shift differentials, over time, and bonuses. My base pay, however, was $36,900. This was calculated based on my regular time day shift pay at thirty-six hours per week. When I became sick, short term disability insurance only covered 60% of my base pay. That equals about $22,140 yearly. That’s a pay cut of $42,860. Ouch, that is one tough pay cut to swallow.
Then, to add insult to injury, I had to have a biopsy to confirm my diagnosis. My insurance deductable was $2500 at the time. I reached that number in one swoop. That’s $22,140-2500= $19640. Then I would see my specialist weekly at $30 a visit, and the medications for the nausea caused by my chemotherapy were $10-40 each. These expenses were known costs associated with my illness that my husband and I were able to manage. My co-payments equaled $3600 in the first year of my illness. $19,640-3600= $16,040.
Other unforeseen expenses started to tally up. I had to travel seventy-five miles round trip to the hospital for treatment. Cha-ching. My husband took time off work to care for me. My son had to attend day care full time since I was too sick to care for him. I needed the visiting nurse to come to my home. I needed supplies for my central line, an infusion pump, and long term antibiotics.
After six months, I was no longer considered employed, and my life insurance had to change hands from my previous employer to me. The life insurance company to one look at my diagnosis of lymphoma and dropped me like I was hot.
Finally, my health insurance company started to refuse reimbursement for my PET scans. At $3000 a pop, the gold standard for cancer staging was not within my budget, and I would spend my few precious healthy moments on hold fighting for payment. However, when I was not healthy, my husband would give the hospital our credit card number for fear my illness would ruin our credit for life.
Then, while I was undergoing my bone marrow transplant, the short-term disability company called my husband to inform him that I had not sent in my social security award letter. He sent in the letter, only to be informed I had been over paid $1242 monthly from October 2006- March 2007. The balance had to be paid back. He again reached for the credit card. That equals $7452 or roughly half my income. $16,040-7452= $8588. This number does not include travel 70 miles roundtrip to Dartmouth Hitchcock Medical Center, and now the 400 miles to Dana Farber. The lunches I had to eat. It does not include the $5000 yearly I was paying in daycare. These numbers put me in the red before mortgage, taxes, insurance, car payments, oil, etc.
I am getting a middle class beat down. My American dream is getting a butt kicking. Yes, this is all tax deductable, but my $1500 tax return was a slap in the face against all my expenses.
Then in February 2008, I was again in remission, my husband’s crohn’s disease began to flare up. He was in constant pain and I pushed for him to pursue treatment so our son could have at least one healthy parent.
He was told, at twenty-nine, his Crohn’s had caused scarring in his bowel and surgery was his only option. The surgery would require an eight week period of recovery.
My lymphoma reoccurred in March 2008. I was told I had exhausted traditional treatment and should look into the major cancer centers in New York and Boston for trial drugs and an allogenic stem cell transplant by an anonymous donor.
With the support of our friends and family, we decided to pursue the medical advice given to us by our physicians.
Four months later, on July 7 2008, I started a clinical trial at Dana Farber Cancer Institute in Boston.
On July 9 2008, my husband underwent a bowel resection at Dartmouth Hitchcock Medical Center.
But wait, he was our insurance policy holder! No work, means no insurance. No work means you have to pay the dreaded COBRA at $1600 a month for a family (and that’s a deal. Health care cost go up at 3x the rate of inflation or 40% in 2008) with a $6000 deductable. Failure to comply with these rules and allowing our insurance to lapse would label us as having “pre-existing conditions” and make us uninsurable for life! We had all ready paid up our $4000 deductable for my health (an increase due to the change in his companies insurance) plus countless dollars in traveling and co-pays.
Disability also means you receive 60% of your base pay. Ouch, our wallets are hurting. Let’s do the math.
Let’s say my husband made $50,000 yearly at the time of his illness. He’s now down to 60% of his pay or $30,000. Not too shabby. This would bring in $2500 monthly tax free from disability insurance, but now we had to pay $1600 monthly to keep our insurance or $19,200 yearly ( $30000-19200=10,800). Then we would have a $6000 deductable ($10,800-6000=$4800)
From a solidly middle class family with an enviable combined income of $115,000 we know had Forty-Eight Hundred dollars for a family of three for food, taxes, housing, travel, etc.
Could you afford to get sick?
My husband spoke with his company who agreed to allow him to work from the hospital and from home on a laptop. Our solution to the daunting financial picture we were facing: My husband would have to continue working.
His surgery required twenty inches of his small bowel to be removed along with his ileo-cecal valve, three hundred sutures and staples, and an eight inch abdominal incision. He took less than a week off. He continued to work through a post-operative infection while I was receiving care in Boston.
Now that his eight week period is up, he is married to his company. Any person who is willing to work through bowel surgery for insurance lives in fear of losing his job. His company now knows this. If there is a choice between supporting me in my transplant or working. Working wins. My parents can take care of me.
I hope people are aware that my story is not unique. The health care system is the next big national crisis. Like oil soared and scared us into change, health care is set to implode at any time. Let’s make some changes before it’s too late.

Wednesday, September 10, 2008

I received another bill in the mail that has been fully rejected by my insurance company. Brigham and Woman's has sent me a bill for a dental evaluation. The “evaluation” was actually a review by their dentist of paperwork my local dentist and my dental hygienist (aka mom) had filled out for pretransplant testing.

Unresolved dental carries can spread bacteria into the body leading to such diseases as pericarditis in immunocompromised patients. Impacted wisdom teeth can also become infected leading to septicemia and ultimately death.

This was a bill Jon insisted on dealing with himself. I have long ago given up on dealing with insurance companies. I do not have the energy to wait on hold for an hour, only to be told I do not have the appropriate information, such as codes or what the hospital submitted as a diagnosis (hodgkin’s is rejected but nodular sclerosing is accepted). I no longer even open my bills. I get to angry at the system and frustrated at the situation.

Jon pays monthly for our insurance coverage. We also have a $4000 deductable. I lost my job due to disability. Our family has taken a pay cut, but our medical expenses have increased. We also now have to pay for gas to the hospital and co-pays. We do all this, but we still have no guarantee for the coverage we pay for.

This is why Aunt B is assigned to my medical bills. She has twenty-five years of experience fighting with insurance companies to remit payment to hospitals. She is a professional. I think she is the best. But Jon just had to deal with this bill himself.

The billing department at B&W called when I was trying to nap. I informed them that I was the patient, and I did not deal with my health care bills. My husband would be out of work at 3:30 pm. The woman informed me she would only be working until three, but to tell my husband the bill for my dental evaluation was rejected in full by my health insurance.

“I have dental insurance.” I informed the voice, who had not given her name. “Why would my health insurance cover a dental evaluation. It needs to be resubmitted.” It sounded like common sense to me.

“We don’t do that.” The cold bitch on the other line informed me. “You consented to be charged by submitting the paperwork.”

Excuse me! My mother is a dental health professional! I had never paid for dental care in my life. I had many qualified dentists who would have done the evaluation for free.

“Do you often call sick transplant patients and refuse to fight for coverage?” I shot at her. She responded she was just returning a phone call. I asked her how she slept at night b/c I'm not sure I could live with myself if I was her. I would probably be dead by now.

It was like verbal diarrhea. I wanted to reach through the phone and pimp slap her.

“I was just returning a phone call.” Was her retord. I heard her click and hang up.

I emailed Aunt Barbara about the situation and confessed my verbal assault on a billing clerk. She, of course, promised to look into it. I’m so lucky to have her. She informed me that generally in these situations B&W would send the bill to Dana Farber and the transplant billing clerk would roll the cost into a bill for pretransplant testing. It would then be reimbursed by my health insurance, and Dana Farber would pay Brigham and Women’s.

Hopefully, someday, I will make enough of an impression to stop these occurrences. Until then, I have Aunt B on the case.

I am a very bad patient

I am a very bad patient. I hear most nurses are. I’ve had many caretakers make excuses for me. Nurses are controlling. They know too much. Or they do not know enough.

I always thought that my being difficult was because of my personality. I do like to be in control, specifically of my body. I am meticulous and efficient, and I don’t understand how people can live any other way. My standards are very high. I will tell you how to do your job if I feel you are not performing effectively, even if I have no idea how to do your job. And I always think I’m right.

I’m only human. I am certainly not perfect.

With this said, I am going to admit a thought process that I don’t believe a healthy person would understand, but everyone should be aware of. I read an article in Newsweek recently about young patients with chronic diseases, AIDs for example, that decide to test whether their medications are really necessary and end up dead. They used the example of two nineteen year old AIDs patients at Montefiore medical this summer. My response was “Only two?”

I remember the teenage dead AIDs patients from my nursing rotations years ago. I remember the song and dance we would do as health care providers trying to revive bodies we knew were dead, but either couldn’t let go or needed the practice to revive others. It’s morbid, but it is better to practice on a child that has no chance of survival on arrival than a 60 year old heart attack patient that may survive twenty more years. It’s what they medical world calls a “slow code.”

I remember our discussions afterwards. Disbelief. How could they have stopped taking their medications? How could they have played russian roullette with their lives? How adolescent to test the boundaries of their diseases and die. What the hell were they thinking? I would always go home depressed.

I’m going to tell you exactly what they were thinking.

I knew my potassium was low. My practitioner had called to inform me I needed to be supplemented on Friday. I ignored her phone call. I told myself I was done being sick. I told myself my body could fix itself. My brain challenged my body and the challenge was on.
Potassium controls the influx of the electrical impulses necessary to control your heart beat. Too much or too little causes cardiac arrhythmias. Prior to my illness, my coworkers and I would discuss methods of suicide. K+ overdose was always popular.

I knew exactly the ramifications of refusing to take my potassium. I did it anyway. I was not trying to kill myself, but I was not trying to live a long healthy life either. I was wondering, if my body can not survive without these medications, was I really alive? And if I knowingly refused to take the medications to sustain my life, was I committing suicide? I decided I was not. I was taking control of my illness, and allowing the cards to fall where they may.

My heart started misbehaving at the bar. I had decided I was going to be a normal fun twenty-six year old. I’d been to an adult toy party in Unity. I’d been to a Battle of the Bands for ALS research (Peace to Steve Meersman), and I had moved on to the bar for some munchies.

Suddenly, I couldn’t think. I couldn’t calculate the tip. I thought I had overdosed myself. I thought I’d gone on a bender and couldn’t handle the combination. Then I thought I was having an anxiety attack. Then I thought my heart was about to explode.

“SHIT! I changed my mind!” I thought. I made a very bad decision. I don’t want to die. I killed myself. I’m going to hell. I’m a bad person. Call a priest. Breathe. Why can’t I feel the air moving. I can’t think.

My cousin raced me to the hospital. She called in advance, but didn’t mention my name. I think the ER was hoping for an anxiety attack, but unfortunately, they got me at the door. High off my ass from party time and in super ventricular tachycardia.

I couldn’t focus. I racked my brain for a reason to survive. What was my motivation to live? My mind drew a blank. I’d used all my good reasons before. I couldn’t take the pain anymore. My family would survive without me. I could no longer do the things I enjoyed. I would be disabled for life. I had nothing left to contribute to society. I was a drain on the system. If I could just focus.

“Potassium” I gasped, “Couldn’t take.” Breathe. “Low.”

“Have you ever had adenosine before, Hillary?” the doctor asked.

“What?! No! I don’t want adenosine!” I shrieked. Now I was really being punished. God must be trying to make his point very clear I raged. No person in their right mind who knew how adenosine worked would want it in their body.

Taking adenosine is somewhat like restarting a computer after installing software. To have your computer run the program correctly, it needs to be shut down and restarted. To have my heart slow down and beat properly, adenosine would shut it down for six seconds, and then my heart would restart at a normal rate.

Six seconds is a long time for my heart not to beat.

It’s all fun and games when I was giving it to someone else, when it was somebody else’s heart I was playing with, but my own, absolutely not.

I wanted to tell them that I had known about my potassium. I wanted to confess that someone with my education who knowingly refused to take supplementation and almost sent themselves into cardiac arrest should not be given an opinion, they should be strapped to the stretcher, gagged, and forcibly treated. I didn’t. I decided I’d ask for a prescription for anti-depressants later. Anyone who was in my position and was not depressed was crazy I thought.

If this was the only conflict while I was in the ER, I might have left with my dignity intact, but this was just the start.

The ER opted for lopressor, which was not so scary, and K+ replacement.

Since I was previously employed in this exact ER, I was blessed to know the staff, who I enjoy very much. However, I was on a bender. I did intend on going home and getting some play from my husband afterwards. I had gotten dressed up for the occasion. Imagine their surprise when they go to strip me for my EKG only to find me in my whore underwear. I was told they would just work around my dress for tests by a group of red faced men.

Then, my blabbering self couldn’t remember my medications, and when my purse was searched to review my prescriptions Heather decided to use the penis pencil I had received at the sex toy party, biting the tip whenever she became nervous or frustrated, to fill out my paperwork.

I forgot to tell the IV nurse tegaderm tears my skin off until after the IV was dressed. I think I need to tattoo the information on my forearms, right below each antecubital .

I was cold and couldn’t control my shaking, which I thought was hysterical. I informed my family and the medical staff that I should be called “twitchells.”

I refused the ativan, which for most people descreases anxiety, but for me causes amnesia. It also increases the likelihood that I’ll become a feisty bitch with no boundaries. All bets are off when that stuff gets in my system.

My husband showed up and I insisted on referring to him as Joe Black, from the 1992 movie with Brad Pitt as an emotionless death incarnate, because I kept forgetting he was there until he popped into my line of vision.

I told my mom she was going to give me an anxiety attack when she came rushing to the ER and kicked her out.

Meanwhile, I thought I was a hysterical one women party, and would not stop laughing. I told the EMT that the nightlife in Claremont sucked, and I was there to get back to Boston as soon as possible. I’m not sure if she understood my joke.

Conveniently, I was the only patient that evening, and since I was a previous employee, the staff treated me like gold despite my misbehaviors. It was a quick trip, but I never did admit I knowingly refused to take my K+.

Being a non-compliant patient is not a risk I am willing to take again, but from my experience I can only surmise that each of those AIDs patients had knowingly decided to take control of their illness. They gambled and lost. I do not believe that their death was the cause of an adolescent immortality complex. I also believe that if I felt the way I did, with a disease that I can acknowledge in public, with a disease that everyone sympathizes with, a disease that does not come with a scarlet letter, then the impulse for AIDs patients to test death is more overwhelming. I’ve seen two hundred patients in one twelve hour shift in an area of the Bronx where the HIV infection rate is one in three. No one has ever admitted to me they had HIV.

I hope health care professionals can read this confessional and understand where I as a patient, and others like me, are coming from. We often risk our lives and suffer in treatment without results, stopping our medications is not an act of defiance and stupidity. It’s an act of independence. It’s a personal choice.

Real Women Are Bald

Real Women Are Bald
Surviving

February 22, 2007
The last thing I remember seeing was a Doctor holding a syringe with a milky substance to my IV. “I’m giving her the propofol.” He announced to the CCU room packed with MDs, nurses, and respiratory therapists. I struggled to get another breath in then. . . nothing.
Darkness.
I woke up after three hours thinking I had one great nap. Except, I had been sedated and ventilated for a week. I was very close to being summarized by my obituary:

Hillary St.Pierre, 24

Hillary St.Pierre, 24, passed away after a courageous battle with lymphoma.
She graduated from Fall Mt. Regional High School in 2001 and from The College of New Rochelle with a degree in nursing in 2004. She worked in the Intensive Care Unit and Emergency Department at Valley Regional until falling ill in April 2006. She enjoyed soccer, art, and knitting.
She leaves behind a husband, Jon Ford, and one son, Alexander. She also leaves behind her parents Nancy and Vic St.Pierre, a twin sister, Heather St.Pierre, and a brother Patrick St.Pierre, all of Charlestown, NH. She will be missed by multiple grandparents, aunts, uncles, and cousins. Calling hours will be announced at a later time.

It hardly seems fair. It seems senseless, another young life snuffed out by cancer. But that is not how the story ends. I survived. It’s how the story begins.
I learned about my week under anesthesia in bits and pieces from family and friends when I was well enough, both physically and emotionally, to handle the news. The news was grim.
I remember that morning, calling my Dad from my house.
“Hi, Dad. I’m feeling a little short of breath and I have a fever. I need a ride up to the cancer clinic so they can take a look at me.” I lied. I did need a ride, that much was true, but my “little shortness of breath” would not allow me to walk ten feet to the bathroom. He was over in five minutes.
I told him there was no need to hurry and to swing by Dunkin Donuts for my breakfast. We relaxed on the way to the hospital and chatted about work and how I was feeling. I had just received a bone marrow transplant 26 days earlier and had yet to regain my strength and energy. I mostly slept and I watched daytime television. Only in the few days previous had I been relieved of a babysitter, my parents and husband finally believing that I was well enough to care for myself for eight hours. Boy, were they in for a surprise.
I walked into the clinic ignoring my Dad’s insistence on a wheelchair and checked myself in. After 10 minutes, I took that wheelchair. I was tired, bald, and breathless. I weighed 100 lbs. and my eyes were sunken in with purple bags indenting them further. Not only did I need a wheel chair, I looked like a needed a wheelchair. He wheeled me over for my chest x-ray.
The nurse practitioner who assessed me I had never seen before, and wouldn’t recognize to this day. She did, however, treat me quickly and efficiently. Diagnosis: pneumonia, just a small pleural infiltrate in the right base. I would need to be admitted as an inpatient for IV antibiotics. I was in an infusion room in a half an hour awaiting a bronchoscopy that would take place in another hour. The bronchoscopy would hopefully identify the organism that had caused my pneumonia so it could be treated more efficiently with antibiotics.
I used the free time to call my family. I called my husband first.
“Hi, Jon. I’m back in the hospital… no, it’s nothing serious. I’m just here for a buff and shine. I have pneumonia and need some antibiotics. I’m going to leave even better than I came in. I need you to pack my bags though. Not much, I don’t think. I won’t be here long: four pairs of pants and four shirts and underwear. Bring movies too so I don’t get bored. I love you.”
Then I called my mother, who my father had all ready spoken to, but she wanted to hear the story from me.
“Yes, mom, I do have pneumonia, but it’s just a little pneumonia. I saw the x-ray myself. . . No, you don’t have to leave work. I’m getting a bronchoscopy and I am going to be sedated anyway. I love you and I’ll see you when you get out.”
I also called to cancel my next day lunch date with a friend before I was wheeled off for my testing.
The details get hazy after that. Versed, the sedation used for my test, will do that to you. Great stuff, but definitely makes you a little foggy.
I know, because I was told, that I had a Doppler study of my legs. That is a sonogram of your arteries searching for a clot or emboli. The theory was that with my decreasing respiratory status maybe I had a pulmonary emboli. A small little clot that had broken off and gone into my lung causing problems.
This theory came about because the bronchoscopy showed nothing! Nada! The infiltrate on my chest x-ray was almost an illusion. Maybe it was an infection, but not an infection that could be cultured. The spot was a bleb, a white out in my lung, a portion of my lung not participating in air exchange, a completely useless portion of lung.
I woke up in the Special Care Unit in the oncology floor. I remember seeing faces and hearing voices in between waves of consciousness, and struggling to breathe. I was grabbing my chest and sweating profusely. Hypoxia and anxiety will do that to a person, so won’t life and death.
I heard my mother’s voice and reached for her hand. I wanted my scapula I told her. Her voice rose an octave and she started drilling my nurse, Megan, whom we had come to know well through my many stays. “What is being done for her? Why can’t she breathe? I want to see a doctor right now!” It was 5:30 and she had just gotten to the hospital from work. My husband had arrived, but he, along with my father, sat quietly, helplessly, in a corner watching the scene unfold in front of them. My mother stormed out to the nurse’s station, and miraculously, appeared with three teams of doctors.
Now, this gesture can be taken two ways. Oncology, infection control, and Critical Care MDs were all in my room, more than 10 of them, assessing my case, discussing how best to treat me, which is modern collaborative health care at its best. But I can guarantee that no one wants to be that person, lying in the bed, being discussed. It is a very scary place to be. I don’t recall their discussion or even their faces, but I do know they ordered Megan to give me medicine. What medicine? I don’t know, but it burned my arm like she took a lighter to my skin. I screamed out in pain and the tears came rolling down my cheeks. When I looked up I saw Megan crying too. I knew I was in trouble.
I had a moment of clarity looking at Megan. I understood that this could be the day of my death, that my breaths could be counted. All I had worked for, accomplished, accumulated could do nothing for me, and I wished I’d done more, less accumulating and more accomplishing. I had everything I ever wanted. I was worried that would be my legacy: a tidy, nicely decorated home for my family, a son that wouldn’t even remember me, a pension for making great cocktails at the parties, and a year and a half of nursing. It hardly seemed spectacular. Why hadn’t I started an orphanage in Africa? Or accumulated foster children to fill up the empty bedrooms? Why hadn’t I found the cure for cancer or AIDs, like I dreamed of when I was a child?
I lost consciousness again. I woke to cold air rushing past my face. I was on a stretcher, with two tearful oncology nurses running that stretcher like THEIR life depended on it.
“No crying in front of the patients!” I wanted to yell at them, but instead I was swept into a huge corner room in the ccu with all the gadgets a girl could dream of.
I finally got really scared. This fear was compounded by a well-meaning nurse flinging open my curtain and yelling, “Who has the versed and the fentany!?” To the lay person this may just mean more great medication to make me groggy, sleepy, and comfortable. To me, a nurse, this meant it was time to intubate someone, put a tube down someone’s throat and hook them to a breathing machine, and that someone was me.
“What?” Gasp. “Who’s getting intubated?!” Gasp, Gasp, Gasp. I managed to holler out through my oxygen mask. The nurse scampered away. I grabbed the nearest resident, “No, versed.” I begged. “I remember everything on versed, give me propofol & ativan instead.” He looked at me blankly, shook his head to appease me, and I went back to desperately gasping for air.
I fought the intubation, convinced I would die on a ventilator. Finally, a Doctor came and showed me a repeat chest x-ray that had been taken just minutes before. The innocuous little pneumonia, the white spot on my previous x-ray had taken over my lungs. There was white where there should have been gray, my lungs were hardly circulating any air. I sighed and resigned to be intubated. Then nothing, darkness.
Victor
2/23/07 9:07 am
Today’s update will NOT start out very upbeat. I am emailing my partial address book from a past email to Hillary. We are back at Dartmouth Hitchcock Hospital. Hillary spiked a small fever yesterday morning at 9:30 or so. Hillary and I drove up for what we expected to be a simple exam as she had been feeling very good. She walked into the hospital for a blood test and a chest x-ray, which has been very common. The x-ray showed that she had a touch of Pneumonia in one lung.
At 2:00 the hematologist decided that she should be admitted to be watched. They did several tests for the type of pneumonia. Then they did tests for blood clots. By 3:30 the nurses were giving her oxygen. By 4:45, they were giving the maximum amount of oxygen and she was gasping for breath. By 5:30 she was in CRITICAL CONDITION.
Hillary was moved from the oncology ward to critical care at 7:00 and by 9:00 she had stopped breathing on her own. She needed to be intubated. The doctors put a breathing tube directly into her lungs. She is completely sedated and will be unconscious for 5-7 days.
Someone put another central line in. Those are getting much more difficult to place as she now has scar tissue from the three other lines that got infected. She also has a feeding tube placed until she gets better. She has to be restrained from moving because she is hitched to so many monitors, fluids, the ventilator and IV drugs and antibiotics.
The infection control team is growing the cultures from the lung infection to find out how to treat it. It's not a common pneumonia. We think it may be related to the staph Staphlococaus aureus) infections that have nearly done her in before. They are checking for what I think they called a superbug?
I'm a little out of it because when I saw her last night at 2 AM I fainted. The nurses are giving her blood transfusions, but they are having huge problems matching her blood now. Apparently, they need to type and match for Antigens now because she has had so many transfusions. I’m going back to be with her. Please pray for us.

2/23/07 11:33 pm
This is Vic from the Hospital, once again, doing play by play. I certainly can't talk, but at least I can type. The Priest came in to give Hillary the Last Rights. When he anointed her, she sat up in bed opened her eyes and just looked at us. This was her first real movement in about 12 hours. The doctors are now looking at a CAT scan for a blood clot, last night they ruled it out, but today the possibility is back. The right side of her heart is not working. The left side is working double time. I keep getting interrupted with worse news, so I will say so long for now.

Hillary

December 2005

I’d been running nonstop trying to find the perfect presents for my two
year old son, Xander. He was a giant of a child, like his father, and it was hard to remind myself that he was only two. I was thumbing through the cars, peering at the race tracks, looking at toys that were clearly too old for him and silently wondering what it would be like when he was 5, 10, or 15 years old. I wondered what I would be like, and if I had been successful as a parent.
I settled on the plastic dinosaurs, a favorite fascination of Xander’s, one that his father endlessly encouraged, some dinosaur books, and matchbox cars.
I’m 23 years old with only one son who’d been conceived when I was nineteen. Pregnancy at 19 years old, I thought, was the worst case scenario. I was going to end up poor, depending on the charity of others to survive, I told myself. I wasn’t going to accomplish anything. I would live in my old hometown in my parent’s house. I had screwed up my whole life. I should abort. I should give the baby up, I thought.
I was being dramatic. The end of the world never came because I had my son at twenty. My boyfriend at the time, Jon, was a 24 year old engineer. He’d worked at his job in some capacity since he was 18 years old. He was stable, loving, and we’d all ready been together for several years.
He took the reigns and cared for our son while I finished my bachelors degree in nursing. We did move back to my hometown, but it was into our own house, which we paid for with out the charity of others. I quickly found a job I enjoyed in an Intensive Care Unit at a local community hospital. My boyfriend and I got married when I turned twenty-two, and I was working on being Suzy homemaker.
Now, my biggest problem was fighting holiday traffic and the other determined Mom for the closest parking spot. I won the fight, of course, being the bitchy alpha mom I aspired to be.
I know what you may be thinking. This sounds like a very mature lifestyle for a 23 year old. I felt like I was in adolescent-adult limbo. My acquaintances who knew me and how I lived assumed I was in my late 20s, with really great genes that kept me looking sixteen, wrinkle free and impossibly model thin. The outsiders who saw me with my son often assumed what I had when I thought when I was pregnant: that I was poor, ignorant, and surviving off the money of others. The town we lived in was poor, and there were plenty of teen mothers, and most often people would assume the worse. I pretended not to notice the icy glares that eased when they noticed my nice car or the store clerk who initially ignored my presence until she noticed the Louis Vuitton diaper bag slung over my shoulder.
I made my way home through the throngs of shoppers, sneaking into my bedroom with out either my husband or son noticing. I tried to think of a clever hiding place, but eventually settled on stuffing the bag of presents beneath the piles of clothes in my walk-in closet. I would find I better hiding place later I told myself.
I flung myself on the bed and sprawled out flat, exhausted from the shopping trip. I swallowed hard, and caught myself. I laid very still and swallowed again. I felt like I was choking.
Being a nurse, a cancerphobe, and an overall health control freak, I started to probe at my neck. I pressed firmly against the base of my neck between my collar bones. I felt all along that base line, until I felt something to the left of my trachea.
“Is that a mass?” I questioned to myself. I started to sweat. It was not particularly hard, but my mind started to race. From Anatomy & Physiology, I knew there were a chain of lymph nodes through my neck, and I knew that there was a node where I had pushed on the mass that should not be able to be felt.
“It’s a tumor, I know it’s a tumor.” My mind screamed at me. I was always thinking about the worst case scenario. My logic was if I had considered the worst case scenario, I would be prepared. Trust me, you want a nurse who has thought the worst through and prepared appropriately.
My logic overcame the screaming inner voice. I was far too busy for it to be cancer. I was young and healthy. I was a nurse. I was contributing to society and supporting my family. I had worked so hard to accomplish all I had, God would simply not do that to me.
“Maybe it’s a goiter.” I thought to myself. I had been tired and thyroid problems did run in the family. I’d told myself that all young moms are tired, that it was a housewife secret no woman wanted to admit for fear of appearing weak.
I pressed my two hands to my throat again, I looked like I was choking myself, and swallowed. The mass didn’t move.
“Nope, not a goiter.” I thought to myself. My thyroid would have moved up and down.
I didn’t waste my time reconsidering the goiter, my mind was racing to the next possibility. “An infection.” I told myself. It was the most reasonable explanation. I worked in a hospital. I was exposed to weird infections, some that could not be identified, all the time. My young healthy immune system had simply gone up in arms over a germ that I was exposed to.
Having determined I only had an infection, I started to relax. My breathing slowed. I got up from bed, locked the door, and began to wrap the presents.

The ICU I worked in was small, and honestly, not all that intensive. It looked the same as the other hospitals I had seen: tan wallpapered walls, yellowed posters, and concrete floors. The TVs had cable, but no DVD players. The rooms all had outside views, but mostly the roof was seen. And of course, it smelled like most other hospitals, a mixture of illness and sweat. This was made worse by the fact that our rinky-dink community hospital had not equipped the ICU with toilets. The rooms had sinks, but no showers. They had commodes, but no flushable toilets. The place was making me sick.
I ran to the employee bathroom to throw up. I had been vomiting a lot recently. The whole family was rejoicing with the thought that baby number 2 might be on the way despite my insistence that two negative blood tests for pregnancy equals no pregnancy.
What could the vomiting be from then? I started poking at my neck. I felt my swollen nodes every morning when I woke up, then again when I had trouble swallowing, and again when I was bored. Mostly, I was obsessed with the damn nodes in my neck.
I splashed water on my face and opened the door to see my very own primary care physician with a medical student sitting at the nurse’s station. PERFECT.
“Paul.” He ignored me and kept looking over his wire-rimmed glasses at the patient’s chart. “PAUL! Just stop for a second, okay, and check this out for me.” He looked up and scrunched his nose. I could be down right pushy if circumstances came to that. The med student stared, open jawed at me.
“I have a mass in my neck!” I screeched.
Dr. Paul stood up and came over to me. He was all of thirty years old, average height, and clearly, the boy who’d become a doctor to throw it in the face of his old high school mates. I thought he was intelligent, and mostly respected his opinion, even though I knew I reminded him of those prissy girls who rejected him.
“This may be the first abnormal thing we see today.” He said to the student. “Swallow.” He commanded.
I swallowed and watched his face. He looked panicked. “Swallow again.” He said. Medical school should teach each of its students to have a poker face.
His face relaxed. “It’s just a node. You’ve probably caught something from working here.” He said.
“Yeah, maybe” I said, feeling a little defeated.
“I wouldn’t worry about it.” He told me. “You just had a CBC done and a chest x-ray that was normal.”
I agreed and let him go on his way while silently stewing. A CBC showed the white blood cell count, which would have been elevated if I had cancer. It wasn’t. The chest x-ray also would have shown if I had a mass in my chest. I didn’t.
My mind hollered at me. The mass wasn’t there when I had those tests done! It’s getting bigger! I’m having trouble swallowing! I had mononucleosis as a child, and you know doc, that’s the only proven link to lymphoma.
With my thoughts screaming at me, I watched him leave.

January 2006
“Hillary, will you get this next patient?” hollered Chris from the back room of the Emergency Department.
I had just started a new position in the ER, which meant a whole lot more running than in the ICU, but generally, a little less thinking. I’d mentioned the nodes in my neck to my co-workers.
“Show it to me when it looks like a second head.” The attending said to me. “That’s an ER doctor.” I thought to myself. Unless it is life threatening and obstructing my airway, it was not his problem
It didn’t seem to be anyone else’s problem either. I tried to seek medical treatment the good old fashioned way. I had made an appointment with Paul, but he’d given me the same opinion he had in the ICU.
I’d then waited a couple weeks, and again scheduled appointment with him at this office. I didn’t have any low grade fevers. I didn’t itch. I didn’t have read patches on my body. I wasn’t having hot flashes or night sweats. I wasn’t to fatigued to work. All I had were a few swollen glands and a BAD feeling.
“okay, Hill. This is what we’re going to do. I want you to go see Frank and see what he has to say.”
Frank! As in Frank Schell, the oncologist! It was close to what I wanted. I preferred some blood tests and a biopsy. I didn’t want to talk with a cancer doctor about nodes in my neck, but he would be thorough.

Hillary

The darkness was comfortable, silent. Limbo felt warm and homey. In the distance, I could see a bright flame, far in the distance and not approaching. This is my only memory of the week, my only vision.
I wish I could say I saw the great beyond, that I had some miraculous, near death experience that explained my purpose in life. But what I received came later and was much better than a vision. I survived. I’m alive!
“Move. Just move your arm, Hillary.” I told myself. I knew where I was. I recognized the room, the large windows, the heavy artillery of medical equipment, and the adjoining room for any of my “special needs.”
I couldn’t move my arm. I fell back into my dreamless sedation.
I awoke in a new room, smaller than the first, folded forward in bed, my head cock-eyed. I was a rag doll, unable to move myself.
I could make out words, but could not speak.
“Coming out of anesthesia…”
“Will take 3 days. . .”
“Transfer back to Special Care Unit . . .”
My sedation wore off in 16 hours, meaning I could talk in decipherable terms, move some body parts, and breathe with assistance of oxygen. No ventilator. The Doctors had underestimated the profound tolerance I had formed to narcotics and benzodiazepines over the course of my almost year long treatment. I had an open door policy when it came to the pharmacy. My cancer had caused a lot of pain and anxiety. Subsequently, I had some strong doses of morphine and ativan.
“I will not become an addict.” I told myself, but this was hardly my biggest worry.
I was transferred back to the oncology floor’s special care unit the very next day after being weaned off the breathing machine since, “my progression had been so rapid.” I was making head way to recovery and I was getting there quickly, according to the doctors.
One may think the rapid change from beating down death’s door to a recovering survivor would be a relief, that the near death experience would immediately be understood as a gift from God, as a second chance, a miracle.
This was not how I felt about my recovery. The feeding tube that had been in my stomach for the past week had been half pulled out, scratching my throat with each movement and making me gag. I kept getting tangled in the urinary catheter tubing, though the muscles in my legs were too atrophied to allow me to move them myself. I could not roll over. My right hand was numb.
I had gotten a second chance at life. I knew I must have a purpose for this world, and all I could do was cry. Cry for my loss of independence, cry for the possibility that this could occur again. I cried at commercials when I had the mental capacity to understand them. I cried when they brought a commode to the side of my bed because I could not walk to the bathroom.
I was 24 years old and as dependent as a child. I had to be rolled over or pulled up in bed. I needed assistance with eating. I couldn’t bathe myself. Finally, I resigned to the being dependent. I acquiesced to what others said would help me heal. I was humiliated, but I had finally released control.
Now, if any of you are health care providers you may know how I felt, I’d been treated for Hodgkin’s for nearly a year, but in illness I was a control freak. I was always looking over the nurse’s shoulder or requesting specific medications from the doctor that I thought would make me more comfortable. I intellectualized the situation, but cancer is not to be intellectualized. There is nothing intelligent about it. It had not followed any reasonable, predictable path, and I had finally been beaten into submission.
I tried to enjoy my dependence. I could call the nurse or a family member any time of day or night with a request and it would be granted. A red popsicle at 3 am? Sure. Instant white rice at 3:30 am, just when you’re getting back to sleep? Okay. After my shower, the nurse would run for a heated blanket and wrap it around my shoulders.
How many people can say that? I decided it was time to fully feel and accept the circumstances that had been occurring. My outlook started to change. I started to feel more positive, and I started to heal physically. What I had understood before was people needed others, were dependent on others, when they were very young or elderly. What I hadn’t understood was how much more we need them in between.
On Day One in the special care unit I decided I was going to sit up with out assistance. I practiced, struggling to a sitting position. I successfully sat for my exam with the resident. Then as she left, the strength in my arms abandoned me. I toppled over. My face squished against the railing of my hospital bed, stuck. I tried to worm my way out of the position, but I had used all my strength to sit for five minutes. All I could manage was a muffled scream against the hard plastic of my bed. Eventually, someone heard.
Day two my strength had improved. I could sit on the side of the bed and dangle my feet. I could manage to stand for a moment before my legs would fail me and I’d be lifted back into bed.
I cried for hours over this. Not heaving sobs, but a constant flow of tears for the body I felt I had left behind. I told myself I was making great progress for the situation, but the words were hollow. I prayed for strength.
The days that followed are a blur of recovery and visitors, napping and narcotics.
I eventually regained the strength to take steps with a walker, then walk with a walker, and then walk again. I felt like I was a child, retraining my muscles to work properly. I tried to retrain my hands, but my fine motor skills were slower to follow. The first three fingers of my right hand were numb and tingled from an apparent issue in the ICU where my sedation wore off, and I had pulled out my A-line. An A-line (arterial line) goes directly into the ulnar artery to monitor hemodynamic status, such as blood pressure. If it’s ripped out, blood pulsates from the site and the trauma damages nerves. I would drop items and be unable to pick them up. I was unable to write, but I was alive I told myself. Eventually, I learned to cope with the inconvenience.
I began to be cognescent of the visitors around me, the loved ones who had some to visit and support me, though they had been there 24/7 since the beginning. Until, several days after my extubation, I was in my own world, focused only on healing and depressed.
Something finally started to change in me. I started to feel again. I loved having people near me and I felt fortunate to have had the experience of nearly dying. Lying in bed, unable to do much else, I thought about how few people get to truly experience and appreciate the dying experience. Dying is part of life, and I had accepted that. In doing this I began to understand myself and enjoy what I had: a hospital room, a skeletal body, and lots of friends and family who loved me.
I’d never stopped to review my life. I’d never believed I could die. Modern medicine told me I had 50 more years of healthy living if I ate right and exercised. I was too preoccupied with decorating the house and having the perfect family to step back and ask myself, “Is this what I want?” or “Am I missing something?” I was lucky to have fought to live, but even more fortunate to have received such a lesson.