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."

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Wednesday, September 10, 2008

Real Women Are Bald

Real Women Are Bald

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.
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.
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.


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.


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.

1 comment:

Zoot said...

This is the post that took me multiple times to navigate, as I recall these days as though they were yesterday. Sounds silly, but "thanks" for reminiscing - it was a journey that reminds us all to enjoy each day with those we love, and to find the positives in life's trials.