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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Friday, February 3, 2012

Hill's Update

I've lost so muh time being in the hospital.
 My trusty blakberry doesn't have a rise and shine feature for its screen.
You figure with thousand of apps created over the past year, they'd do something for hospital induced disorentation, but NOOOOOO.
Columbia-Pres has managed to block outgoing emails, making it impossible to communicate via my smart phone (aka blackberry curve). This is something they've accomplished since 2004 when I was here as a student.
They should be very, very proud. I haven't been able to communicate my status, but I keep trying!!
I keep writing, snippets, unsure of what is going through.
Long story very short: This all started about Dec. 11. I received my last dose of SGN-35 in NYC at NYU's Langone Medical Center with what appeared to be good results, waited the allotted 3 weeks, then took it again at my home base hospital in Lebanon, NH with my go-to heme-team.
I ran to Dr. O and Ellen, NP in NYC, again, for suspected graft vs. host of the bowel on Dec. 22 after I was sitting on the toilet day-in-and-day-out, feeling miserable, unable to eat, hypovolemic, passing out, being chased down and caught to save my life.
Very dangerous.
I was advised to see Dr. Edwin Alyea, my Dana Farber Doc, The Head of Transplant at Dana Farber, super-genius extrodinaire, to guide my gvhd are.
He gave it to me. It was his problem.
But the holidays, conferences, life, dont wait for anything, including my life threatening disease.
I'd been put on 60 mg of prednisone, a standard dose of 1mg/1kg for GVHD of the bowel which was confirmed by colonoscopy/endoscopy.
When that didn't work I was put on enterocort/budenoside, another 9 mg daily, to target the specific area of the colon I had inflammed.
Nothing worked.
Dr. A had me take immodium around he clock, and i began to eat again. I  was still in a lot of pain, but felt like like I was coming around.
However, with my body exhausted, no reseverves to survive.
 I started to lose consciousness.
I started to wonder if this is what it felt like to die a slow, painful death.
I'd stand and personalize it until one day X chased after me into the bathroom, which he'd seen  J do a hundred times, and asked, "Now, was that an anyuerysm or an arrythmia?"
"What the hell?"
I thoiught to myself, awakening from my near-syncopal episode.
After getting over the shock, ""Where'd you hear THAT?" I thouhgt I'd ask the question. They were finally beoming too much. It'd finally become too much on my little man.
X had been havng a very strong reaction for a long time. My hearts breaksfor him.
I;m so happ ywe've instilled in him muliple......   and I fell asleep.

i think i was going to say a strong sense of empathy? or at least a good vocab?

whatever, today i am improving. Dad, Denis Boivin, a lifelong friend and trooper and i ran to see dr. o at his new office on 60th st. and madison/fifth Ave. right accross from the central park zoo.
Boo-RA.

Ellen came in, took one look at me and confirms my fears: i need to be admitted, pronto. she began working on the admission.

Thats when i passed out, flaccid, in my dad's arms: no 1500 pages of records from the past 6.5 yrs of trtmnt. i bought myself a full work up, at least, that's what i asked for... boo-ra.

my liver was failing, my kidnys were failing, but i was alive!
ive worried since then if i was going to die. i've floated in and out of consciousness, but i'm going to make it, hopefully for everyone, if not, for my family and God to finish God's work.

Chemo may be revlomid or a study drug starting ASAP.
Thats what's up. That was weeks ago.
i just wasnted to be taken care of, and here i am. That was Jan. 24th. Today is Feb.3.

32 comments:

Anonymous said...

Well, they may have successfully blocked outgoing Email, but if that is their intention, they surely have met their match!! They can't stop our girl from communicating!!

Thanks for the post girl ... & while words fail me in terms of being able to come up with something that might make things better, please know that I (& a whole lot of other folks) have you in our thoughts & prayers.

I have thought about calling but not done so becasue I worry about waking you if I did. However know my throughs are with you Hill ...

Your courage continues to inspire me. And know that if there is anything I can do, I'm a short phone call away.

F

lanabanana said...

Amen to what Frank said!!

Alanna

Valerie said...

love to you! and all the jewish bases covered!!

Connie said...

Praying for you and your family, Hillary.
Love,
Connie

BarbaraG said...

“For by you I can run against a troop, and by my God I can leap over a wall.” (2 Sam 22:30)
You are strong, Hillary, and your faith is even stronger. You will make it through these hard weeks!
I so hope you will get better soon!
Sending energy and loving thoughts to you and your family,
Barbara

Brynn said...

Update from Vic...

Hi too all
Tough update this time again. She is still resting peacefully in her now private room in NY City. She always loved the city even though she is a small town girl.
She is in complete liver failure. She can't say anything but we know she can hear us. She had a slumber. Party last night. Lots of friends came by. We broke a lot of rules. Only allowed 2 per room. We had about 30 at 1 time. Oh well hopefully we won't need to come back here. The doctor was great, he told security that we had unlimited visitors. They gave us a consulting office for our extra room.
Now we have just family. She is calm. Xander read Z and the Cancer Meanie to Hillary. That's the book they wrote. So we are hanging. Out.. memere said a rosary this morning. Fr George and Fr Stan said masses for her. Friends have been saying masses, novenas, lighting candles, and sending lots of prayers. I don't know if her other book will ever be puublished. She is not here to push it.
Hillary must be hanging on for the super bowl. I hope all the sickness didn't let her become a NY giants fan. She must really be extremely sick if that happened.
May god bless
Vic Nancy, Patrick, Grace, Allen, Pierce, Preston, Heather, Jon, Xander and God Bless Hillary

Anonymous said...

I'm so happy she got to have a slumber party with her friends and family. My thoughts and prayers to you all.

Anonymous said...

I only know of this wonderful woman from other friends on FB. I've been watching this blog for awhile and these posts are so sad to read but it sounds like Hillary is a fighter, and an amazing soul. I wish I had the chance to know her like you all do. God bless you all.

barbara rowe said...

praying for you all

Anonymous said...

Rest in peace, sweet girl. You're loved and missed dearly.

Anonymous said...

YOU ARE TRULY AMAZING MISS HILLARY... I AM GLAD WE GOT TO SEE ADN HAVE A SLUMBER PARTY WITH YOU ON SAT.. I AM CONTINUING TO SEND PRAYERS AND LOVE A LONG WITH SOOO MANY OTHERS.. YOU ARE DEF LOVED BY SOOO MANY AND YOU ARE A STRONG GIRL.. ULTIMATE GIRL FIGHTER AS I HAVE BEEN CALLING YOU.. STAY STRONG... LOVE YOU <3
MICHELLE SPRINGER

Brynn said...

Latest update from Vic...

Hi too. All
Hillary is still clinging to life. We don't think she is in pain.. At least the average person woulld not be feeling a thing.. Patrick,Heather and I stayed up with her last night. Grace and Nancy just got back. Jon and Xander aren't far away.
Lord it is time to take her to heaven.
God bless you Hill

Loraine Ritchey said...

My heart is with you and I know the place you are at the moment I hope a hope for you

Anonymous said...

Thoughts and prayers are with you all.

Anonymous said...

Thoughts and prayers with you all.
Keri Greenwood

Donna said...

Thinking of you and lifting you up in prayer.

Anonymous said...

Lots of love and prayers from Charlestown!

Anonymous said...

We love you Hillary! Its ok to stop the fight and let God take you in his arms! We are so proud of you, we will never forget you!

linda keenan said...

thinking of you hillary and your whole family. xoxoxooxoxoxoxo linda keenan

Anonymous said...

I sent this email last night, not knowing Hillary's current condition. I want Vic and Nancy to know that if they, or anyone in the St. Pierre family needs anything in New York, I am here in the city and happy to do anything i can to help.

Hi Hillary,
I know that I have not seen you in so long, but my dad updated me on your condition today. I am so sorry to hear it, but it sounds like you are truly giving everything you've got to fight it!

Know that I live in NYC and if there's anything I can do for you or your family, you should feel free to reach out to me. I am sending all my joy to you, and all my prayers upward, stamped with your name.

Love and luck,
Sarah Edkins
smedkins@gmail.com

Anonymous said...

May your soul be at peace, you bright and beautiful woman. You are an inspiration.

Doug Gagne said...

Vic,
Thank you soooo much for the updates. "Amazing Dad." Hillary has touched so many hearts with her amazing strenght and spirit to live. We have been praying for one of God's miracles. We pray for strength and courage for your family as you face this devasting reality.
Hillary we love you so very much !! We continue to pray for that one miracle.

Love to all,
Doug and Jean

Anonymous said...

Hillary you and your family have been on my mind for days. I hope you all find the peace you deserve. I cannot put into words how much of an inspiration you are, you have touched so many peoples souls in your short lifetime. As a new nurse I strive to be half as much of an advocate as you have been. I only knew you from school but you have a smile a person could never forget. Thank you for being such a beautiful and courageous woman. -Elise Sawyer Kraus

Anonymous said...

Although I didn't know Hillary personally I knew who she was and have followed her blog. I am so sad to learn of her passing. She really was an inspiration to so many people. It sounds like she fought to the very end and tried to keep herself and everyone around her positive. She never gave up hope. My thoughts and prayers are with her and her family and friends. She can finally rest peacefully and pain free.

Anonymous said...

Go in peace my friend ... you will be missed by many. You made a difference in the lives of so many people ... you made a difference to me. I shall miss your smile ... your spark ... & your spunk. But I am relieved that you are at peace.

I miss you already Hill.
F

Anonymous said...

Someone once told me that when you lose someone precious to you, you should honor his or her memory by incorporating one of his/her most important qualities into your own life.
So many of us on this blog were inspired by Hillary's love of her family, especially her young son, and her enormous courage in the face of this adversity.
Now she is at peace, safe with her Lord. May that same faith that has sustained this family for so long bring them the peace they so richly deserve.

I will never forget you, Hillary.

Carol

Valerie said...

Missing Hillary already. Her spunk and intelligence and voice were needed in this world. I'm thankful that I got to hear and really take in what she had to share.

Xander, I truly believe her love for you and her desire to repair the world you have inherited is what motivated her to fight for so long. You are lucky to have had such an inspiring mother. She is gone too soon, but as you grow I hope you will find that if you listen to your inner voice you'll see she's already taught you what you need to know.

Let's all continue the work of fighting for what Hillary believed in.

Anonymous said...

Dear Hillary,

You are a light of hope in the dark world of cancer. Thank you for sharing your life so openly. Thank you. Thank you.

Anonymous said...

I met Hillary one time this past summer. I felt like I had known her forever. We battled.the same disease. She was and.is an inspiration. Such a strong woman with such love. God speed and God bless you. Thank you to her family for.sharing her with us

Anonymous said...

As I read her last words I cant help but cry, but I know Hil was a strong person. She helped me get through a tough time in college, she was a great friend. I misd her and know she's looking down at all of us. Xander and her whole family are in my prayers.

Anonymous said...

LOVING AND THINKING ABOUT YOU AND THE FAMILY WHILE SITTING HERE LISTENING TO YOUR PLAYLIST ALL DAY.. RIP MY ULTIMATE GIRL FIGHTER.. LOVES
MICHELLE S.

lauren wallace said...

Heaven got another angel ready to start saving this world....you have been so strong for so long and now you can rest at ease and watch your little boy grow up from up above...
Lauren