WELCOME TO BALDIE'S BLOG

Hillary's Obituary

2012-02-09T22:32:00.001-05:00

Hi too all

Here is a small amount of how Hillary Lived. Apparently I did not hear all The Stories. I have heard several new ones from her friends this week! We are having a reception after the funeral and burial on Saturday at the Claremont Senior Center. Please bring your best memories as we want to leave with the best memories of how she was able to do so much in such a short time.

Thank you for the outpouring of support, prayers, novenas, masses and so much more. We have such a support system. we know That Hillary touched the lives of so many people. Yesterday she had 5000 visitors to her blog! And I don't blog!You all have touched our lives more than we can ever say.

Vic, Nancy, Patrick & Grace, Allen, Heather Pierce & Preston, Jonathan, Alexander and especially God Bless Hillary

Celebrating Hillary's Life

2012-02-07T21:15:00.000-05:00

Calling Hours
Feb. 10 (Friday), 2012
2:00 pm - 4:00 pm @ Stringers
6:00 pm - 8:00 pm @ Stringers
Claremont, NH

Funeral
Feb. 11 (Saturday), 2012
1:00 pm @ Saint Joseph Parish

Update from Vic & family

2012-02-07T13:05:00.000-05:00

Hi too all
Hillary has passed away tonight (Feb 6, 2012) with her twin sister Heather, brother Patrick and his wife Grace, mother Nancy and father Vic all at her bedside. Her husband Jon Ford and her son "Xander" had gone back home so X could play in his last game of the season. We had kidded, that Hillary would probably be there to see it also. It was a 7:30 pm game and she left us at 6:50 pm.

Hillary hodgekins disease had been active for 6 years. She had an extremely agressive strain that would mutate and render that type of chemo useless. She had survived 2 bone marrow transplants, multiple chemo treatments, radiation and trial drugs. She allways had a positive outlook.

Tonight we were listening to the music on her blog. She always wanted her music to tell her story. When "don't worry be happy"

Hill's Update

2012-02-03T06:49:00.000-05:00

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.

Hillary Update from Vic

2012-02-03T01:35:00.000-05:00

there is a miracle called friendship that dwells within the heart.

and you don't know how it happens or when it gets its start...

but the happiness its brings you always gives a special lift ,

then you realize that friendship is gods precious gift.

hi all

I have been reading and praying a lot this week. Hillary had told me ten years ago that I should get out of Charlestown and sees the cities. I was perfectly happy being a country bumpkin. So she went to New York to spread her wings and learn about how other people live. Well this week I found out how many good friends we all have. I think we were visited by all races and nationalities that had 1 thing in common. They all care deeply about Hillary.

I don't know where to start this update, I can't sugar coat it anymore. We have seen a down turn in her health since December 11th when she started having bowel trouble. We went to her specialist in NY last week and we left his office in an ambulance. We have been at Columbia Presbyterian Hospital for the last 8 days. Her condition is stable at best but she is very week. Her mind is still pretty sharp but her body is wearing out. Several issues have her down.

1st the Hodgkins disease just keeps finding away to mutate and come back after every type of chemo they have given. Even after radiation the location just moved and came back. Then we tried the 2 different types of bone marrow transplants. Well the second one created a complication call Graff vs Host disease. (GVHD) That had caused problems with her eyes and lungs. Now it has taken over the kidney. We are testing to see if that is also affecting the liver. Meanwhile the cancer is back again for I believe the 14th time. Hillary's body has found away to beat 13 types of Chemo and drug treatments. Her body has found away to fight with her graffs cells too. How could a person so loving and friendly fight so hard. We keep telling her to fight this sickness but her body keeps fighting the cures!!

I have a lot of things to tell you all about. How on the floor with 50+ beds everyone already knows Hillary as a celebrity. I watched her tonight make a doctor feel special. I watched as nurses are just amazed at what power she has to make friends and get them to open up about their lives not hers. I watched other cancer patience called in their Rabbi's, Greek orthodox priests after she had the Catholic Priest come in to pray with her and give her the Sacrament of the sick. I watched as many care givers come in and are inspired by her will, her personality and her positive attitude. We have been talking a lot about dying this week. We expect it is inevitable. But she is determined to live life the best way she can right to the last breathe. We have been here before and she has come back to prove us wrong. I hope and Pray that she can come up with another miracle. If anybody can it is Hillary.

Please keep us in your prayers. Please send Hillary an email note "Hillary St. Pierre" hillaryst_pierre@hotmail.com. I don't think she has any idea of how many people she has touched in a short lifetime

Thank you all for being such good friends

Vic, Nancy, Patrick and Grace, Preston, Pierce Heather and Allen, Xander, Jon and especially for Hillary

Uptown Girl

2012-02-01T11:12:00.000-05:00

This is Hillary, reporting from 160th St. St; The Munstein Buiding at Columbia Presbytarian Hospital, uptown Manhattan.
This is also the region known as Morningside Heights where, when I was in college, I researched the dichotomy of care received between the ten block walk from where I'm currently housed and Bronx-Lebanon Hospital.
I'm happy to be on the south side, the good side.
I was admitted a week ago yesterday after a routine clinic heck up with Dr. O'Connor (or so I thought) at his brand new office on 60th st, 108 blocks away, where i promprly had a "near syncopal " episode, and got myself a bed here.
I'm not sure what has been getting onto the blog.
My phone works sometimes; others it doesn't.
Passing out, going flaccid in my father's arms wasn't anything either one of us was prepared for. It bought me a ticket in the ambulance here, which I desperately needed.
The week has been testing and strengthening.
My kidney stent was replaced at DHMC, but had all ready begun to fail due to the extreme dehrydration from the round-the-clock diarrhea.
Sun. before we hightailed it to NYC I noticed severe swelling in my cankles. Can't even recognize them.
By Tues the swelling had spread to my stomach.
Weds. this was determined to be lymphadema or my cancerous lymph nodes swelling and draining with no where to go.
Along with my kidneys failing, so isn't my liver, which controls clotting in the bodu; however, it's imperative to know if i have gvhd of the liver. This will effect the chemotherapy regimen.
Revlomid, which I have on a standby, increases graft vs. host issues; the other one does not.
I feel the sickest I've been in a long time, maybe ever. I am a two person assst to the bathroom, but I am not longer losing consciousness!!
My clotting times and kidneys are the worst they've ever been. I really have begun to wonder if I'll die from this.
I've promised to keep fighting for him forever, and that's what I plan on the doing.
Last night, the nurses gave me fresh frozen plasma, a blog product, to assist in clotting, in prepaation for my biopsy.
This am my PT/INR was 1.2 but my hemoglobin had fallen 2 pts to 8, probably dilutaional from adding fluids, but I can't risk bleeding.
I'm getting a CT of my stomach to see if I'm bleeding there; pray something will go my way SOON. There are so many options!

Beginning skin breakdown

2012-01-31T15:06:00.000-05:00

After

Warning: Graphic

2012-01-30T04:34:00.001-05:00

I was admitted to O'Connor's treatment early am last Weds after a days of struggling. Admitted is strong. I'm giving it time. I was/am in rough shape. I still am. I knew if I didn't get to NY for treatment I may not survive. I was too weak. The swollen ankles are from lymphadenopathy or swollen lymphode. The swollen cancerous nodes in my thighs were found by doppler. My abdomen, which is distended beyond belief, has improved. The rest, well, it's there. These are the only sites of known disease.

The whole picture

2012-01-29T07:24:00.001-05:00

Below the GW Bridge in the am, the bridge that crosses from the Bronx to Manhattan. As long as I remember, I always loved the silhouette of the skyline driving past as the sun rises or falls with it. It always seemed full of new possibilities, a whole new life, like entering a whole new world. Over the years the connotations and dreams have passed, grown, somehow changed, but the feelings have remained the same: the awestruck pattern of possibility ahead. It still exists. But I never thought I'd be a patient. Now, I am. I was admitted via ambulance after having a "near syncopal" episode (almost passing out) at my appt. With Dr. O tues. It was the clinic's first day with seeing patients. I made an impression for sure at the brand new lymphatic center on 60th and 5th. Gorgeous place but in the process of the moving, All records were being moved. It is Chinese New Year today. Canal st is having dragon dancers. I know x would love it. I had only come to nyc for a check up. I packed up three sets of hospital outfits. I had jewelry pieces, my hobbies. I kept obsessing over small hobbies to keep me busy. These are things I never do. Then I slept, a comatose sleep. I barely woke up to call NHPR regarding "obamacare," and what would happen if the ACA was federally overturned during my treatment, taking away the 2 million stipend for me to continue my care? The professional answer: they don't know.

Candi

2012-01-29T06:13:00.001-05:00

10:30 chine uniRick santorum, mitt romney, newt gingrcish
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Smiling Still at 8:30!

2012-01-27T21:19:00.001-05:00

After a very long day of more diagnostic testing, evaluating where my sites of cancerous dx are and how all my co-morbidities are affecting my healing I'm still smiling. My family is here: dad (since tues) now my mom, jon, and x. All safe, smiling and happy. College friends are caring for me! This is what I needed: a fresh pair of eyes from professionals who had no idea what I'd suffered through. All updates will be here now to conserve energy. Showing up with no piece of my 1000+ page chart made catching up difficult, but everything happens for a reason. I'm exactly where I'm supposed to be. Those prayers, novenas, thoughts absolutely helped. It couldn't have come at a better time. Now, I have to publish the prayer. Anybody who knows St,judes novena, send it to my comments section.

The George Washington Bridge as a patient!

2012-01-27T15:59:00.001-05:00

It's hard to believe The GW was a starting point, a landmark in life. Senior year in community nursing our these assignment at The College of New Rochelle was to identify needs based upon socio-economic area. "Morningside height," which has columbia-pres on its south boundary and Harlem hospital by St.Nick's Park to the North. There is no other place in America like it where disproprortionate care based upon insurance, income, race, etc is so prevalent. Survival rates vary from low-mid 30s at Harlem to 80s at columbia. It's amazing, but I'm at columbia, ready to nap.

View from colum-pres. Hospital room

2012-01-27T14:45:00.001-05:00

I will only be updating my blog due my severe illness. Nothing personal. My room only has me in it for the moment. Here is the view. Mom (nancy) is coming today. She is staying with J and X at the Marriot in New rochelle, 5 to 10 miles from here. I went to college in New Rochelle. We have vacationed here in happy times. I hope my freinds with kids X's age and good memories will help the anxiety. Vic (dAd who drove me down for my appt. Mon. With super brave explorer Denis B.) Has been at vigil, staying at a HoJo's near yankee stadium (the scary hood) to be close via cab. The fam is all moving to The marriot suite in westchester, which is easy and convenient with one bed (king?), A pull out bed, kitchenette. We use marriot points, a discount code, but $$ is daunting. The marriot was where j and I would stay when we were courting. There are restuarants galore, glow bowling, an arcade, Whatever gives the fam piece of mind. Hopefully, my health will give that piece. Fr. Stan is saying a special bereaverary mass for me today. Pray for my health, my strength and survival so I may continue to recover and do the important work, exposing health care flaws, offering cost-effective options to improve it by looking outside the box. The good days are coming. My family and I just need a lot of love and support now. You can contact me here via comments. I love you all for the support. I'm being carried by your strength and that's a boundless blessing.

Lower extremity swelling

2012-01-27T13:38:00.001-05:00

This started last Fri, I think, from having my right kidney stent replaced due to its failure from dehydration. My extreme diarrhea/restrictions since early Dec had allowed it to get filled with "gunk," and my idneys were failing. There is some improvement from the 3+pitting edema on the right. Its very painful. Now on all updates will be on here or guided through facebook. I'm too sick for personal updates. I'm in the hulstein building at colum-pres in Man. On 168th st getting a complete work up. Novenas, prayers. Please send them. I need many

The truth

2012-01-26T07:05:00.001-05:00

I realized today it's been a month since Christmas, 6 wks since the terrible odysseys began with... Who the hell knows? I sugar coated the extent of my issues. There were so many to list beyond the insidiously growing cancer. On Christmas, I had been running to the bathroom each 30 min. For a stool. I had been an in-patient. I was fighting, and it had been a MONTh! I was too weak to live for myself. Everytime I prayed, I could only ask for help for loved ones who I couldn't help. I couldn't focus on me just the love I'd leave. I knew I was dying. I felt helpless, but I couldn't get what I needed: someone to look at me holistically, not as a bowel, GVHD, kidney. I knew my GVHD needed fixing first and along with it the extreme pain, with electrolyte imbalances leading to passing out, failure to thrive (I've lost 20 Lbs. Etcs). But Nobody was consulting to give me answers. No one was putting the pieces together. I was falling apart. All I wanted was to lie down and be told what to do to feel better, and I couldn't get a reliable phone call or opinion. I kept getting asked by attendings, specialists, my past geniuses what "I wanted to do?" For problems beyond me. I felt come hell, high water I needed to get to Dr.O. I'd die without treatment. I was passing out each time I moved bc each night I'd have diarrhea that would clean out my bowel and my nutrition. I couldn't get up from a sitting position due to thigh muscle wasting from steroids: couldn't climb stairs, step in or out of cars. People would follow me around to catch. My kidneys began to fail due to dehydration. The stent did fail and was replaced. My liver is failing. My heart is trying to follow. Long story short: we ran to NYC Tues through the icy-rain, scared, sliding. Me comatose. Dad with lifelong friend Denis B. For support drove for my first appt. With Dr. O at the new lymphatic center on 60th st. Dr. O's NP, Ellen, saw me first and nonchalantly asked about admission. I accepted. When I'm thrown a lifeline, I'm grabbing. While at the clinic the staff was organizing my bed and transfer via car/ambuelette service, no lights, or fanfare, I got bored. I stood up to grab my back pack, then everything went black. I passed out. Dad caught me and tried to lower me in a chair. I saw him through the fog. He was horrified, paralyzed. I realized he had never prepared or imagined this moment where I could die in his arms. That couldn't happen. I managed to scream help through gibberish, then dad yelled. When in doubt, call for help, especially in hospitals, clinics, the street near PD or FDNY. My doc called "911" as I lay flaccid and a real ambulance, which we begged, but didn't have to since the medics were great, to drive past good "911" hospitals to Colum-PRes where dr. O's team had a plan. So instead of the horse ride through the zoo at central park I've been dreaming of, which X would love, I got an ambulance ride, my first as a patient. I have been admitted to columbia-presbytarian hospital in NYC on 168th due to my illness. Mon. x thought I had an appt tues. and would be home. He now knows I'm sick in NYC but I don't know what else. He's prob going to have a bad week until we decide what to do with the fam, likely stay in school until Fri. At least. I have multiorgan failure, but will hopefully recover. Please inform anybody who can help and give my family extra TLC. Denis B, down for anything for as long I can remember, waited patiently, supporting Dad. He chased the ambulance over 100 blocks north from Manhattan to Harlem trying to decide where to sleep or stay safely. Denis took the car and drove home, leaving vic and I here. Dad slept in the rm with me first. We got to the rm at 3am after being in a NY ER, which he'd never experienced. He slept in the lounge staying vigil. But after one day of serious care where I saw specialist after specialist that made recommendations, that Dr. O had called in from CA, giving my immed. Family his cell phone number! I was treated by the doctor/pulitzer prize winning author of "Emperor of all Maladies: a history and treatment of Cancer.". Whatever they're doing, I think it's working. I could eat a little. I stand without passing out. I'm not crying in pain, but I'll have a game plan. That's the update. There's too much, and yet, to say except thanks for everybody's commitment to praying and boosting our family. Much love, Hillary
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Bitter or better

2012-01-25T11:01:00.001-05:00

This was the quote a super mom left off with from the NBC nightly news. Her son is undergoing standard treatment for refractory lymphoma, aka a stem cell transplant. Her daughter, who had to accept traditional care for a separate cancer has recovered, but they are in financial distress now labeled insuranceless, as a self pay, which believe it or not is more expensive than having insurance. No group protection. Mom is trying to raffle off her sick 3 year old's paintings on facebook for cash. Sound familiar? And I'm the one finally feeling bitter. I'm entitled. It's been a long fight, and still, mom's have to raffle their kid's energy for treatment. Even "dying" I must have a job for piece of mind. Also on the news were state plans for universal health care and exchanges. It said NH has not done anything, but VT has created a single payer system. Don't believe everything you hear. I know NH has a catastrophic illness exchange created. I know they have innovative ideas to make care delivery safer. Its one of the things I'm proudest of, and of course, it's being threatened. I need to write that piece but I've been distracted with duties. I think its time to do some hard core complaining first. I'm feeling bitter, not better. Who knew a stomach virus could cause adrenal insufficiency when I felt my best? Who knew I'd re-ocur, the insurance would deny the awful chemo to make me better at $10000 a daily pill? Who knew my graft vs host would flare up in early dec., IN THE BOWEL rendering me useless, sleeping constantly, unable to eat or drink? Who knew itd be the first time I really suspected I could die, that itd be so painful I'd beg for relief, and worse, after over half a decade of fighting, I wouldn't be able to get ahold of my primary NP or doc for guidance? To top it off, who knew I'd consult my expert teams only to have home team blow it off for the easy answer. I've fought off worse. I won't let this be my downfall. But I've become so weak. I can only eat a few very healthy things or surrender myself to wrenching in the bathroom.
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Whoa, cankle

2012-01-23T14:10:00.001-05:00

Whoa, check out the +2 pitting edema, or major swelling that sticks in place when I push it, on my right ankle, only my right. Swelling can signify heart failure but my left side is fine. I haven't peed out all the fluids from my stent replacement Friday. I have no other symptoms other than my kidney still hurts, I can't pee much and I have to do it often. I'm relieved to see Dr. O tomorrow bc I don't know where to fix myself from here. When I don't know where to go, just call tenacious Dr. O!

Contagious Joy: Spread the wealth

2012-01-23T02:36:00.001-05:00

It's a truth I thought I could change: unless you've walked in a person's shoes, carried their cross or lived over and over their trials, you just can't understand what their journey is about. Nobody can. You can't substitute your life experience for another's. People need to learn for themselves. Maybe, that's part of life. Studies show we have very poor insight into our own behavior. We have even less insight into what motivates our own, though I can take a guess: my motivation is a healthy, happy life dedicated to serving and informing others. How do you think I'm doing? Transparency has been key but has it been enough? Has it been too much? Am i just sharing and not caring? I have found an overall philosophy for my time here and that is to leave all those I've encountered better somehow, happier/smarter/more enlightened than when we met. If I stand alone before my maker and am asked, "did I bring joy, ease or happiness to the lives of each person I encountered?" And the answer is yes, then maybe, I can count my life a success.
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Treatmennt/ Physical Update

2012-01-21T09:10:00.001-05:00

Ugh, housing is just something new to research again. With med travel anywhere, transportation and housing is the most daunting and stressful. How am I going to get there? Who is going to drive and what will we do when we get there? How much will gas cost? Can I afford it? Will they be able to care for me among so many? The options are limitless but limiting. First, I always find a point of making a hospital employee assist, sometimes in writing by email. This could be the nurse, a msw, a housing liasion or a volunteer you're lucky to have found. At least this person has an official title. Its them I ask about tried and true methods: are there hotel endowments? Is there an opening somewhere like Hope Lodge? Where do I park and how much is that? Do u think these options will be available when I'm on study? I always try to think ahead. I prepare for the worst and hope for the best. Meanwhile, I have the sounds of bank registers ching chinging in the background of my mind while reality sets in. Will I stay night to night in whatever is cheapest on hotwire like a hobo? Will I make an arrangement with a good college friend and take over the in-lawsuite that I'll furnish? Do I stay in manhattan or West Chester County? Either way, any decision, this is started when I don't even have a therapeutic schedule. I put God in charge and try not to cope with the stress. Stress is immunocompromising, who knew? I guess we'll see the travel involved then. I'll be in NYC the 24th. I'm lucky I have experience of living and choosing these places previously for fun. I can't say relocation. Traveling/moving during the worst feelings of your life makes it almost impossilbe. Whatever the problem is: My bowel is still inflamed. Packing, above and beyond the travel, you need a pharmacopious amount of meds. I'm on 60mg pred with 9 mg enterocort and taking immodium around the clock, which limits me to 1 or 2 watery stools, or none if I stick to a strict diet: no sugar or carbs. I'm getting hydration 3x weekly finally. At home, which should limit my passing out. Keep a list of your current medications wth you always. At the top have your primary and srcondary diagnosis and any health history to go with it. After that, have all your allergies in red large block print and pay. This small amount of organization. On top of this, Im having my right kidney stent replaced tomorrow. Urology, and I, feel its clogged or compromised. Being on treatment "hiatus" we scheduled. Revlomid comes in today soo. I'm cleared but do not plan to take it until speaking with Dr. O on Tues. I'm hoping to heal and go to trial if possible. My GVHD specialist said revlomid is known to make GVHD worse. Look forward to seeing you. If there's anything you need, let me know. Hill
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Choosing Happy: An Emotional return

2012-01-19T05:20:00.001-05:00

Returning to health means also feeling and processing emotions after battling for your life and limb, which is no easy accomplishment. I chose a long time ago not to reminisce or relive the worst times. It's better this way. Processing would only bring me back to those moments of fear. It could cause flashbacks and a whole lot of emotional pain I'd prefer not to experience, again, ever. I need to live in right now. I need to live my best life. I try to skip to the best feelings: to the elation, to the Gratitude that makes me feel better. I want joy and laughter back, quickly. I want fun among the pain. Its easy to miss those feelings amidst the disease. Its probably even easier to fall prey to feelings of "why me" and see what other people take for granted. It's even harder to witness others whining and complaining about their losses. Forgetting the bad, moving on quickly, enjoying the moment is against our automatic reaction. It's a choice, a choice that brings love and strength where there could be anger and pain. But not everybody works this way or has to. I dare say few people actively try to skip the misery. Lots that do are dying and understand how trivial the small things are. We just don't have the time for petty. I want the best out of life now, it takes effort, but just ask and you will receive back. Put yourself out first. The common reaction to illness or stress is to get angry and allow the post traumatic feelings to take over. Life gets difficult, but studies show taking out your anger on others, lashing out at unsuspecting targets like your co-worker, barista or bf, only makes you feel worse. It spreads the mirth, the pain, and probably to where it is all ready. Adverse studies show that faking a little fun and happiness goes a long way. It's all about choice. I didn't choose to be ill, to spend my 20s touring hospitals, fighting to find a cure, but that's what I'm doing. I only get to choose so little. I can't change it, so I focus on what can change. If you can't do what you want then want and enjoy something else. It's all in the attitude, hospital trips can make loving memories, happiness and gratitude can be found among the dying, as long as that's how you choose to approach it, as long as that is your choice.
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We're all in this together

2012-01-18T21:10:00.001-05:00

With the acute pain, suffering, and danger seemingly out of the way, I'm now open to feel emotions. And it's good. It really takes losing something to truly appreciate it. Fri. I'd accepted the order to increase my pred. Dose to 120mg despite feeling it would decrease my quality of life with the swelling, bloating, GERD, and hot flash side effects while probably decreasing my life span with further weakening my immune system, causing bone wasting and muscle wasting. With no other options, I felt lost. I kept hoping I could postpone and get better. I made a last ditch call to Dr. A who put the few stools I was having at night after testing food into perspective: it wasn't that bad. I could suck it up, take immodium or anything else to plug me up, and eat only "safe" foods. That's what I needed. That's what I chose. I'm taking some cramping and debilitating pain. My diet is nuts (literally), nutella, apples, oranges, juice drinks, chicken with tabouli, and deli turkey. Pudding works and shockingly, these skinny cow fudge bars. I'm hungry more than not but I can move! There was an unfortunate experiment with chicken and pesto. The pesto tasted so good with its cheeses.... Damn them. I took my immodium first. I'd given the food the 2hr time frame so it could stick me to the toilet if that would happen. Or so I thought. At 2:30 the cramps and gas hit sending me doubled over to the toilet, emptying my bowel. Meanwhile, x gets out of school at 2:45. I can't leave the toilet to get the phone at 2:35. Somehow I work a toilet hiatus and call J while running back to the other Jon, thanking God along the way that our house is in the middle of X's school and J's work, which are only 5 min. Apart themselves. I dragged J out of his meeting to bring x to me, and luckily, it was just an episode. The bad pain, the suffering, just comes in semi-controllable episodes now. I finally got IV hydration set up, which shouldn't have been a stress I needed to request, but I did. I was passing out. My BUN was 150. My creatanine 1.5. These kidney function tests insinuates severe dehydration with starting kidney failure. Now palliative care will come to my home three times weekly to keep those kidneys working. I saw my urologist, Dr. Pais, before Anna. My right kidney has been hurting more. I can barely pee. Even though my stent is metal, should be able to stay for a year, and possibly unbendable, mine may be clogged. Since I am technically on treatment hiatus and labs look good, the stent is getting replaced Fri. Yes, in two days. I have revlomid if I need to take chemo. I've been financially approved, but I don't want to. I am meeting with Dr. O on Jan. 24th (next Tues) to discuss signing me up for a trial, all of which had ended in Jan. And had not been available. There is so much going on. This bout of illness has effected x, especially, severely. X doesn't want me driving due to my passing out. He doesn't want me alone. He follows me around ready to catch. He's had anxiety attacks, but he is talking openly about his fears. He's afraid I'm going to die, And this time, we all shared in our fears, honestly, together. We're all in this together.
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Contagious Happiness: Life's little moments

2012-01-15T02:51:00.001-05:00

I'd been excited since scheduling bridal shopping with Steph about the trip even though I knew people were apprehensive about "dragging me out of bed.". The automatic inclination is to let the sick rest, a common thought meant to look out for the best interest. When I was healthy, I wondered too why the terminally ill still had degrees, careers, even kids. Now, I get it. I understand that I'm fighting a battle and that battle isn't to just exist. It is to exist and participate, especially in life's big moments and even if it means some discomfort. So S scheduled her fitting at David's Bridal and I started getting giddy about the "traditional bride experience" I thought she'd love. I wanted it to be full of "this is your day," "you're the queen," and "all eyes on you.". Showing up at the store with S, Aunt L, my mom and I, s got a little culture shock as we flew open the doors, grabbed chairs so I didn't pass out, ran smack into faux victorian desks with consultants trying to organize gaggles of girls, 6 other groups of brides with wedding parties, and immediately got a lecture from a pushy sales woman on the presence of her drink around the dresses, her lack of a date for Sept, etc. It was my job to blow passed that crap to the good stuff: playing dress up and finding a gown. Luckily S got through the gauntlet in good spirits despite the estrogen shock, and we got hooked up with the corner room besides the shoe room for lots of handicapped space. Having the dress options come, picking a gorgeous pair of shoes to "just try the dresses on" then buying them bc they look like jimmy choos, taking pictures and awwing was great, but you never know when a major life moment is lurking around the corner. I felt it in the air before I saw it. I'd stepped away to take my medicine when I saw S out of the corner of my eye, prancing and glowing. My mom rushed to get me back to see. She'd found "the dress!" The perfect one that made her feel regal, like the queen of her castle, a dress she could have dreamed about her whole life, a dress that could start a lifetime. I didn't really believe in moments like that, you know, love at first sight.... With a dress, but it changed the entire atmosphere of the store. Suddenly, all the staff, consultants, managers, district manager, seamstress (and all hands were on deck for the hundreds of women) were lined up and fawning over S. They were at her feet tailoring, bustling and saying she was gorgeous. The other parties were all looking. Everyone knew it was perfect and paid homage. It was contagious happiness. We even got teary. S rang and bell and got a wish before saying, "I finally feel like a bride." The happiness was deeper than I'd felt it in a long time, maybe even different than before, and it was being shared mutually by what had turned out to be a perfect group for the day. How could I ever miss that? Living with plans for the future, shopping for weddings, picturing better days ahead of vacations, even when the next hour is not guaranteed, makes life, and the pain, worth living. I've never regretted participating in what I thought was important. I have regretted missing sports, school events, even parties, especially when I get an infection anyway. I have lived without looking towards the future, and it felt dismal. Its fun to plan for better days even if they may be dreams. Nobody will ever tell you to miss a major life event, but you have to make yourself present and available. Friends, remember, we still want to support you. We're still us. Your lives are important, more than you realize. If you find yourself thinking of omitting someone due to their debilitating illness, talk to them. You maybe surprised being together heals more than hurts.
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2012-01-14T20:09:00.001-05:00

It takes a lot of loss to truly appreciate the "small" things in life, and realize how nothing is ever "small.". I thought I had gratitude for my needs and activities of everyday living, like eating, breathing, and moving pain free. I knew I was lucky before I got sick, but these were "small," inconsequential occurences that my body took care of naturally. Well, now my body doesn't eat and digest naturally, breathe easily, or survive without pain. The temporary relief I receive when the medications are correct are the best in my life. I feel like I'm in heaven, floating on air, But I rarely get there. The floating could be from the mind altering meds too. I don't care how the feeling of "almost normal" happens. Good news is, I think I'm rounding the bend. I'll be getting the elation of survival sometime. Just keep saying those prayers. Fri. Jan. 13 was the Feast of St. Hilary. A favorite day of mine, Fr. Stan had a special mass for me that day planned without the knowledge of my feast day. St. Hilary was a writer, exiled, he wrote to promote the church and has the first known published catholic text in the Americas, at least I think. Wouldn't want to lie about a saint, but how cool is that?
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Dress shopping with Steph

2012-01-14T10:07:00.001-05:00

Evidence I'm alive and looking well with my cousin Steph, who's getting married! Going to David's checking out dresses!

2012-01-13T18:33:00.001-05:00

I found the energy for a revival "hillary fit." I'm holding off on Prednisone. I feel ignored by my MD, not receiving his finest. These are bad times happening at Dartmouth. The secretary got sick :( The budget is affecting care but I'm not losing my life over it. I called Boston to Dr. Ted Alyea, who called me back after not seeing me in over a year while in the car on the way home from the airport! He said hold off on the pred. Take immodium around the clock. Try to plug up the one or two emptying stools and he'll try to consult again. At least I have some plan. My electrolytes are stable. I am dehydrated. I am still passing out. I know increasing the dose of prednisone would ultimately lower my quality of life, as well as lessen the length, and that's worth waiting for. I will get the best option.
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2012-01-13T17:54:00.001-05:00

After all I've done, tried to do, advocated for so everybody could access care, I can't access the best opinion to save my life. I have one opinion on my bowel GVHD. I'm getting it.
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X quotables

2012-01-13T08:38:00.001-05:00

X is growing, emotionally and physically, in leaps and bounds, but emotionally he shocks me. Weeks ago when I got a virus starting this spiral he demanded to know "Who gave me the virus?!" Was it taking care of him or was it Dad. Obviously, Dad gets the blame, but this has gone on too long. I'm in too much pain, sleeping too much too early, missing games. He knows something is different. So the tide turned, "You wouldn't have cancer if I wasn't here." X retorted yesterday, in passing of course, as he was changing out of hot tub clothes at nana's. That's always how he drops bombshells, quIck and unexpectedly. He gets it from me. "You were healthy, then I came and you got sick." He made his point. I could see the kid logic, I was diagnosed before he turned 3. All he remembers is sick me and the only thing that changed, in his mind, is him. "No way." I shot back, using the same easy, almost joking light hearted tone he was. "What are you talking about? You're why I'm here! You make me get out of bed and have fun. What would I be doing NOW if you weren't here?" I countered. This is all true. Failure to move, motivate and push yourself kills you. It is a trend I noticed before I got sick. Beyond this, X is the future I see and want to influence most. All these years I've been dreaming about what we'll do, and it's amazing to find there is always more! He's kept me alive. "You'd be with Dad." X said. "Dad is at work!" I screeched, "like everyone else. It's us bud.". With that he was dressed, done, convo over. That's what I get, but the change in him was quick. I crawled into bed, curled in ab pain, by 7:30, like every night, but I forgot my goods: water, juice, apple, meds, meds, meds. I dragged myself miserably out of bed and into the living room where both x and j scrambled to wait on me! X beat out J, walking me back to bed, refusing to hand my meds over until I was where I belonged. Then, he left..... Coming back with ice water and an apple (one of a handful of things I can eat)! My heart breaks that my family has to suffer this with me, but I'm so lucky. J has been amazing, taking over as a parent doing homework nightly, especially spelling and reading, meetings, coaching, even making play dates! Life is absolutely different than we envisioned, but it doesn't have to be awful. Staying up past a bed time, not always eating at the table, letting X play video games I wouldn't for longer than I want, maybe, is all part of life and compromising with a partner, not just being sick. Change is of necessity. We're more flexible. It's how I've stayed alive so far medically. We know our priorities, and hopefully, going with the flow, addressing whatever comes our way, is the best way to cope.
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X quotables

2012-01-13T08:23:00.001-05:00

X quotables

2012-01-13T07:15:00.001-05:00

Getting healthy again

2012-01-11T16:08:00.001-05:00

Getting healthy again after a life threatening illness brings relief, joy and elation like no other event in life brings. Everything is easier and sweeter. Breathing, walking, talking feels airy and freeing. I haven't made it there yet. I'm still tired and having abdominal side effects. I am eating. Good things. I'm thinking. I have energy. I just don't have the extreme prednisone side effects I should have. I'm scared of going on 120 mg of pred. Even though Dr. Alyea (melissa of course) has promised me they're looking into all other possibilities. Dr. A just needs to be updated by Dr. G regarding the last 1.5 years to make his decision more effective. I'm supposed to have an idea of a possible treatment, at least an appointment, by tomorrow. If not, by Friday, I may give up and resort to the prednisone. I'm fortunate a friend of mine has offered quarantine space in her home in E. Hampton. I could be a posh New Yorker while sick.
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Dad-date

2012-01-10T23:41:00.001-05:00

I usually get a copy of my dad's update but this one didn't come my way. Hmmm, maybe it had something to do with his tone. What Dad doesn't know is I love reading his perspective (even if he over exaggerates). This "healthy Hillary" list could have been a government trial in information dissemination. What started out as an update to friends and family in 2006 took on a life of its own with more and more people asking to get on the list in the past 6 years, then those people forwarding it to others who have followed my battle, then maybe so on and so forth. I have no idea who we've touched and if or how this has helped, but I know it's blessed me with a blanket of support and love that I know I always have with me. It's a huge part of why I keep fighting. I'm so blessed. Hi to all. Happy New year to all.. My last update was almost a month ago now and I apologize for taking so long. The holidays are always hectic and this year was even more so. So the good news first. 2011 was probably Hillary's best year as far as being sick from her Cancer in the last 5 years. She only spent a couple of stays in the hospital. The miracle of 34th street was only a dream. The cancer has come back and she is now off of that trial drug. I believe this is the 14th time that the Hodgkin disease has mutated and returned. She is trying to get on a different drug until a new trial drug study is started in February. Dr O has moved from NYU to Columbia University as of Jan 2. So she will need to be the miracle of 151st st in NY. Over the holiday she went more than 3 weeks without being able to hold down any food. I don't know how she did it! As you know when she gets sick I get very nervous, don't sleep well. But this time I thought I should just eat what Hillary could not. Yes I pigged out with lots of good food. I wake up in the middle of the night and instead of writing all of you and update I ate Cookies!! Hillary told me tonight that the steroids she is on do not make her grow like Barry Bonds. Those are a different type. She has an appointment tomorrow because she has actually lost 3" in height! They have not checked her Bone density in 2 years. Tomorrow is that painful day. If it keeps going Xander at 8 years old will be taller than his mother! There is only 4" difference now! Last week all the new medications started to work and she would get cravings and we would go out to where ever to eat. Her energy has come back a little. Her spirit is still strong but her physical being is weak. So as we all start a new Year -- 2012 lets hope we can all get and stay healthy. Enjoy the year ahead and make all your dreams come true. The world is not perfect but worrying does not make it better. Live life to the fullest and enjoy what you have. I just enjoy all my friends as they all care about Hillary. Lots of love Vic Nancy, Patrick and Grace, Preston, Pierce, Allen, Heather, Jon, Xander, and especially Hillary.-

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Step by step

2012-01-10T17:22:00.001-05:00

Today, Mon, X is in school. I'm determined to get myself on a healthy schedule. At 6:30 I wake up to ease the pain and nausea and get the adrenaline I need with meds. They'll kick in at 7 a, when x wakes. Then I've scheduled to take more: my pred, entorcort, etc. I try to take by priority but they're all important. I get some juice and an apple to eat. By 8 am or so maybe I'll have stomached them while getting x off to school. It was $500 for a remote car starter so I think I'm going to train X to turn on the car and heat. He's been scrapping it since he was 6. I've made Dr. Calls. I spoke with both Alyea's and O'Connor's office. Alyea will control my GVHD. Now it's Tues. And I haven't heard back from Mel and Alyea. Marc and anna are talking about putting me on 120 mg of pred. If the 60mg of pred, 30 mg of enterocort, and 1 mg of flurinef doesn't work by Fri. I'll take it too, again, as a life and death decision with hopes of a reasonable taper before the symptoms drive me, or my fam, crazy. My aunt b has come to the rescue with our bills. Aunt P has rescued me, taking me to appts, making them fun, and making sure I eat the best. She's extra mothering me, and I wish she could feel how wonderful it is. I was grieving today about the future plans I had that will now probably never come to fruition. I mourned the worse over the side story: not be able to open my house like an orphanage or to be able to care for all the people in their need that helped me grow and evolve to be who I am. Life really is about the journey. It's a marathon not a sprint. The plan was in motion by 21. The family, cape in place. My career coming along quickly to supplement this utopia I had created in my mind in part with my dad where we could develop a sustainable community where people could gather and fish, stay safely with assistance into old age or raise a well rounded family in nature among other great neighbors. Before cancer, the plan was all about logstics, money. How we were going to do it. Now I just wish we could. I had the right idea. Good intentions. I don't understand why me when so many people have no intentions or bad intentions, but its hard enough to consider "what could have been." I definately stay far away from the "why mes?" I'll focus on awesome aunt P, J, X everybody that lifts me up. You're my miracle.
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DHMC Receives ACO Award (finish, needs picture)

2012-01-10T08:23:00.001-05:00

In a letter dated Tuesday, December 20, 2011 from Dartmouth Pres. Jim Weinstein to the Dartmouth-Hitchcock community, DH is one of 32 sites in the country picked by the Centers for Medicare and Medicaid Services (CMS) to participate in the Pioneer Accountable Care Organization (ACO) project. Receiving the ACO is significant, because these awards were only given to organizations with the experience and readiness to effectively implement innovative new models according to CMS.

The awards were announced Dec. 19th by the Secretary of Health and Human Services, Kathleen Sebelius, in Washington, DC. Drs. Barbara Walters and John Butterly were in attendance to represent DH.

The Pioneer ACO model aims to improve care and lower costs by bringing together physicians, hospitals, and other health care providers to coordinate care for individual patients. The project expands on the very successful Physician Group Practice demonstration project that was implemented in community group practices previously.
Through the Pioneer ACO Model, Dartmouth-Hitchcock will work with CMS to provide Medicare beneficiaries with higher quality care, while reducing growth in Medicare expenditures through enhanced care coordination.
"Providing the highest quality health care for the patients of our region, while driving cost out of the system, is critical to our goal of creating a sustainable health system" said Dartmouth-Hitchcock CEO and President James N. Weinstein, DO, MS. "The Pioneer project will allow us to continue and expand on the work we have already been doing in developing and implementing new care and payment models. We are delighted to be one of the organizations selected by CMS to participate in the Pioneer ACO Model."
Dartmouth-Hitchcock was chosen specifically by the Innovation Center to test the effectiveness of several models of payment in helping organizations make a rapid transition to higher quality care at a lower cost to Medicare.
"These Pioneer ACOs represent our nation's leaders in health systems innovation, providing highly coordinated care for patients at lower costs," said Tavenner, a Representative of CMS. "Dartmouth-Hitchcock has demonstrated significant experience in providing high quality, coordinated care, and we are excited to partner with them," Tavenner said.
Under the Pioneer ACO Model, CMS will provide incentives for participating health care providers who form an organization to coordinate care for patients. Providers who band together through this model will be required to meet quality standards based upon, among other measures, patient outcomes and care coordination among the provider team.
CMS will use robust quality measures and other criteria to reward ACOs for providing beneficiaries with a positive patient experience and better health outcomes, while also rewarding Dartmouth-Hitchcock for reducing growth in Medicare expenditures for the same patient population.
Unlike a managed care plan, Medicare beneficiaries will not be locked into a restricted panel of providers. The Pioneer ACO Model is not a health plan or managed care plan. Under the Pioneer ACO Model, beneficiaries seeing doctors participating in an ACO will maintain the ability to see any doctor or healthcare provider, as well as the full benefits associated with traditional Medicare.
Congratulations and thanks to the many people who worked on the application for this award. Dartmouth-Hitchcock can indeed lead the nation in providing new, effective models of care delivery as part of a sustainable health system, and through their acceptance and participation in The ACO are taking strives towards more efficient, cost effective care for patients.
For more information about the Pioneer ACO Model, visit the Pioneer ACO website at
http://www.innovations.cms.gov/areas-of-focus/seamless-and-coordinated-care-models/pioneer-aco/ or
http://www.innovations.cms.gov/areas-of-focus/seamless-and-coordinated-care-models/pioneer-aco/
The Pioneer ACO Model is one of several initiatives underway at CMS designed to encourage the formation of ACOs. For more information, visit
http://www.cms.gov/acoFor more information about the Innovation Center, visit
http://innovations.cms.gov

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The good news is....

2012-01-10T06:41:00.001-05:00

It's past midnight, and I can't sleep. I have insomnia! That's one of the very first signs of prednisone side effects. What else am I doing? I'm eating! I couldn't sleep bc I was thinking about eating! I woke up and cooked myself some adobe chicken on the foreman. I think I can handle protein. I've narrowed down foods I can eat: apples, tangerines, or fruits and veggies, deli turkey slices, and nuts. Still, this is a good sign. I was able to organize my meds today so I can function efficiently. I also called the doc team: Dr. O now at columbia pres. With his nurse Ellen and Dr. Alyea with his NP Melissa at Dana Farber in Boston. Alyea will manage my GVHD, somehow, maybe by finding me a genius specialist. O'Connor is the treatment guy, except the revlomid which is the chemo I may take until feb may make gvhd worse. I can't even take therapy until I heal and gain strength. I think I'm headed straight to trial at columbia in Feb. It's only two weeks away. Its two weeks to stabilize myself. Funny thing is, when I feel the worst, I'm always told I look so great. I get the comment from my specialists, "Wow, you look great for what you've been through, so much different than I pictured you.". I wonder, how did they picture me? Blue in a box seems to be the consensus so I guess somewhere barely above there. Thank you for the comments. Your support is my inspiration. Any questions, ask. I'm here to serve and honestly answer.
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The good news is....

2012-01-10T06:39:00.001-05:00

Falling

2012-01-09T07:04:00.001-05:00

I did it. The first time ever, really. I fell. I stood up quickly from the couch. I made it to the island. I hollered for help but all I heard was j holler back. I didn't sense help was coming, though obviously it was, so instead of sitting myself safely on the floor and lying down, which would have been an admission of my body being in control, I somehow, don't remember, got my coconut h20 to take my meds before flinging myself into my bedroom where everything is soft and safe. But its not. I passed out. Hit my shin on the bedframe. Now I'm in bed. Maybe I need to be admitted to get over this hurdle. I haven't gotten any supportive care like fluids. I'm taking supplements, but its all pills. I need to get my strength before considering chemo. Tomorrow I'm calling my local doc, maybe dr A about my GVHD. I should have a specialist. That's how I've conquered gvhd so far, mb that needs to happen again.
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Falling

2012-01-08T18:29:00.001-05:00

A Day for Novenas

2012-01-08T09:56:00.001-05:00

It's time to pray novenas: prayers special to StJude and Mary that are used in desperate situations, to heal me. I keep thinking about them, praying, then I fall asleep from the weakness, fatigue and exhaustion caused by malnutrition and cancer. I feel like I'm dying. It's painful. Each am I try to take the right cocktail of meds at the right time so I can function for more than an hour. Yesterday I finally went a day without diarrhea. I ate carefully: tangerines, an apple and added another steroid. If this doesn't work by the end of the week I need a GI Specialist for GVHD or else I won't survive the combination of attacks: viruses, addison's, GVHD, kidney issues, cancer and malnutrition. I'm all ready so weak. I put myself in God's hands again. Please remember to pray the novenas for my miracle. This is what it is: Traditionally, the novena prayer is said for 9 days. The 9 days signifies the 9 days the early Apostles prayed together during the time between the Ascension of Jesus, and Pentecost, when they experienced the powerful presence of the Holy Spirit.

What prayers should I say? How do I say them?
Your prayer can be as simple as "St. Jude, please help me with (insert your request)", You should then follow your St. Jude prayer by saying 3 Our Father, 3 Hail Mary, and 3 Gloria prayers. Meditating and/or some type of fasting during the 9 days provides extra comfort and strength when saying the prayers. Here is one special for the sick. What's most important is you think of me, believe and have faith that I will return to health: St. Jude, you witnessed the healing power of our Lord Jesus. You saw his compassion for the sick and dying. You yourself touched the sick, shared the sorrows of the mournful, and encouraged the despairing. You received this authority and healing power to work wonders, to cure the incurable, to make people whole. We ask you to intercede with our brother, Jesus, to send his saving grace to heal the sickness and suffering of _________________________________, to uplift his/her despondent spirits, and to instill hope in his/her hearts. Amen.". Thank you for your faith and support.
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GVHD OF The Bowel

2012-01-07T11:34:00.000-05:00

This has been the first time, in a long time, that I've sat at my computer to write anything.
I haven't had the strength to think and sit simultaneously. I always wondered who those commercials were taking about when they advised you can't take a medication if you "can't sit or stand for longer than 30 min."
"Who are those people and where do they exists?" I wondered.
Now I know.
The 60 mg prednisone has not stopped the attack on my guy. All foods flow freely through the GI tract.
The heme team put their heads together to prescribe another steroid that works directly o the bowel.
If this fails, there is the option of doubling my dose to an unheard of 120mg.
I wish I would have known tinkering and not starting at the exact recommended dose of 1mg/kg could have that consequence, but I didn't.
I wish I had a GVHD specialist guiding over this. I've managed to find specialists for my lungs and eyes that has given me major comfort. I'm going to check out Boston for this.
I do feel like I'm fading away, too sick and sleepy to do much. I hope I don't, but it's been a long time since fighting has been so difficult.
I'm awake about 4 hours daily, but it's worth it. I try to keep my routine with X, hang out with friends.
I think about the Basketball tourney's coming up. I'm so lucky that I know I can go anywhere I choose to get treated and my family will make it happen.
Hopefully it will make it happen soon enough.
My electrolytes, despite the diarrhea, are stable. Aside from feeling AWFUL, I'm looking okay.
Thank you again for all your support through the season. I wouldn't have made it through without you. Also, see those pretty lunch totes to the right? My friend Darcy is selling them on my behalf. We know a new trial in NYC is starting in Feb., and we're all ready trying to prepare for the expenses. I still have fight, and I'm so lucky for the faith and support of everybody. Thanks. Please pray this new medicine works so I can eat.
Hillary

Update

2012-01-05T09:21:00.000-05:00

Time for an update: I'm still flat on my ass. I haven't been able to sit at a chair yet. I'm weak but gaining strength! I can now eat. Digestion is slowed, but I still lose most through loose stools hours afterwards. I think I'm getting nutrients. Drinking lots. I'm eating healthy and cautiously: fruit, veggies, nuts. Carbs and sugars don't treat me well, but I feel like I'm on the upswing. I've been out at appt. Tues. And weds. Tues. I saw Dr. G which assured me that my cancer is slow growing and I need to heal before starting the revlomid which will drop my counts. I've filled out all sorts of financial aid too for the $1000+ a pop medicine. Weds. I saw endorcine who I love. These are the people who will get me off prednisone!! I got to 7.5 mg and stopped, thinking no adrenals means steroids forever. Not so. Today is the first day of full rest, though when J comes home I just fall asleep. Today J has a colonoscopy and he'll still coach Lex and the 5th and 6th graders tonight. When it rains it pours. X has had his kidney infection but went to school yesterday. Tomorrow he has an ultrasound of his kidneys. Hopefully these infx are a fluke. I'm seeing urology sometime around next Tues when I see anna next. I'm getting the stent removed and replaced because it's time. Chemo Revlomid may come in by the end of the week. Then I'll have weekly checks at DHMC for my blood counts until I can switch to a trial medication in NY in Feb. that has less side effects. The cancer growing slowly, thank goodness. This way I can regain my strength, heal my GVHD, Gut, and addison's, then go back to kicking cancer's ass. Thank you, everybody, for your love and support. When I become this ill, it's hard to see beyond my toes. I can't even run off adrenaline, bc my adrenals are fried. I get tunnel vision and try to focus on the task at hand, one step at a time, one moment at a time. People say take the struggles day by day, but take it as slow as you need, second by second, whatever it takes.
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Revlomid: here I come

2012-01-02T18:18:00.001-05:00

Again, I did it. I fought off high dose long term steroids for too long, since Dec. 11, made myself miseralble and finally am taking the 60mg I need to eat and digest without everything flowing out. It's a fruitless battle. I hope it's not the only fruitless battle. I hope people have gained fonts of knowledge from my experience, if nothing else. But I think I'm coming round for more: revlomid here I come.
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2012: Kidney Infxs and Extra Mom TLC

2012-01-01T17:40:00.001-05:00

Too often my body is taken over by conflicting ailments, one illness that is bad but when put with the other makes life 100x worse. Often it's nausea, vomiting and diarrhea together that leaves me heaving into the garbage while I sit on the toilet praying that it will stop. Well, that hasn't. Instead, It got worse weeks ago with another combo. Now I have a phlegmy cough with spit that needs outing but I can't with my gvhd of the colon. The gvhd has made it impossible for me to eat anything without it passing directly through my body. Now anything like a BM is yellow like my mepron, apparently one of the only things my body is absorbing. How mean is it to make me hack and not allow me to control my bowels? It's like God is playing his own sick joke. Then, For kicks, X has a UTI, his second in a month. UTIs are rare in boys and infx 2 got him scheduled for an ultrasound to look for anatomical issues that would give him kidney infections. I'm wondering why we both have problems with kidney infections. I know mine comes from my lymphoma and the necessarily placed stent, but what's up with X? Sympathy sickness? And that pain is awful. I want him healthy and happy. So today, the first day of 2012, I spent in bed babying my baby. Wrapping him up, stroking his hair, rubbing his belly, catching his vomit and giving him medicine. I call it "extra mom tlc." Sick little ones, or sick anyones, don't heal by medicine alone. They heal and thrive by getting love, hugs, and sincere care that validates getting through the illness to grow healthily. That kind of care, the care that is given lovingly and selflessly, is the best care for all. I wish there were more people available and able to give it. I wish I were one of them.
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Still sick: Happy 2012

2011-12-31T20:05:00.001-05:00

I haven't been this ill since my first transplant when mucositis tore out my bowel. Literally, my entire GI tract was one big oozing hole of pain with multitudes of cancres. I've been through lung failure, septicemia, relapses and kidney failures but none other will make you feel as terminally ill than this. I advise avoiding pain at all costs, but if you have to avoid it piece by piece 1. Don't mess with the eyes or teeth 2. Don't hurt the lungs/ability to breathe. The second will make you feel like you're dying. The first is so unbearable you'll want to kill yourself. 3. Do not get an inflammatory bowel issue. It will rule your life. I haven't had a meal in over a month. I'm still dropping weight despite the steroids. I think I need to take at least 60mg daily, but I've been taking 50mg. I've been too sick to call. I tried to get J to before I realized what it would take to get a decent prednisone order on Dec. 31st. But what is the worst about being sick, the most terrible thing is how it tears up your personality, sucking out all the energy for jokes, dancing and laughter. I've been losing my ability to have and be fun. Its hard to initiate when you can barely move. I'm lucky other people have picked it up. Good thing my fam won't let me get away without being silly. Cheers to 2012. The media aren't the messages; the messages are the media.
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Coming back

2011-12-28T09:23:00.001-05:00

I could feel myself slipping away. I knew I was grasping at life, but I'd become so tired. I couldn't think straight. I wasn't sad. I wasn't angry. And I was sick, so sick trying to find anyway to get better. Its been a long time since I felt so bad. Feeling sick and fading away started almost simultaneously. I collapsed and had to leave my son's bball game. That was weeks ago. I should have known then, but I'd prepared myself to stay healthy like never before: I eat oranges and airborne, have a good diet. None of that changes if my body fails. I think I got sick first, a uti from my stent and a virus, then I needed blood but thought I needed fluids instead. I'd call looking for help but nobody would order blood tests, anything beyond what I requested. I've never seen this. I've never diluted myself with water, getting sicker, when I needed a transfusion. But no orders?! Maybe its Project lean. I'm being rationed, with insurance. I just didn't feel like I have a leader guiding my entire body here. I felt like I was guiding way too much, especially with being so sick. I need a GVHD specialist that will force me to take prednisone to recover, the only thing that brought me back. The adrenals went with the stress of the illness and suddenly, over night, I was sleeping. I couldn't do anything. Then, to make sure I was done for, my graft vs. Host rages in my colon. I've never had gvhd of the bowel. It is evil and miserable. I wouldn't wish it on Hitler. I couldn't cough or vomit or wretch in pain without running to the bathroom. I had taken a colonoscopy prep that produced nothing, but still refused high dose steroids. Thank goodness for all the loved ones and support I have. My dad and grandparents drove me down to NYC in a day, which made a huge difference. Dr. O got the ball rolling with a mini cancerlebrity doctor hissy fit when he couldn't officially order the treatment he wanted me to have (I would have loved to see the big one). He wanted to fire my heme team and hire a new one, which he essentially did. Dr G and A were out that day. O was being told I may have to wait until Jan 3 to get revlomid ordered, which according to A, is more difficult to get than pounds of oxycode, and takes weeks once the application is started. Luckily, Dr. Lansignan and Moody, the Drs O got ahold of, both of whom are very good, had the paperwork moving. With checks and initials in three black boxes provided by the FDA where I swear that I will not become pregnant, ever. I will not even think about having sex without protection during treatment even though I've been menopausal since 2006. That form didn't care that I'd swear off sex for treatment, as long as I didn't even think of babies. Why? Because revlomid started out as the 80s disaster thalidomide, which was originally prescribed for nausea in pregnant woman, but caused severe birth defects: new appendages, flippers, etc. It was a medical disaster, in pregnant women, but there are a lot of disasters in pregnant women that patients like me will gobble up. I think I can start next week. Thankfully, where I thought this was going, the details of what it feels like to slowly fade, what its like when your body is passing away, is not where it went. My steroids are kicking in. In bed, in illness all I could do was worry about the family, especially the kids involved. I could listen to X playing with his friends. I hated not being able to get up and cater to them: say hi, bring out the food and drinks, make sure they have everything even though they can get it themselves. It's a mom thing. All while sick before xmas I was upset I couldn't make x's favorite holiday cookies. Again, thank goodness for mom. I'm so lucky to have the family I have, to keep me uplifted and happy. I'm fortunate that I think I'm going to see X's 9th birthday, even though my family was told I would die before his 4th. Hopefully, maybe, the steroids will help pull out another few years.
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GVHD Got me

2011-12-26T14:55:00.001-05:00

I've been listening to the sound of fluid rattling in my lungs each night as I try to battle this awful graft vs host flare up. I'm frothing. It sounds like I'm drowning in my lungs. Worse, my bowels now have involvement. If I eat, everything will flow out of me in liquid form. I've battled this off for week's now. It must be some of the worst suffering known to humanity. Today, my prednisone has been jumped to 40mg. Generally it'd be mg/kg, which would make it about 65 mg to treat my GVHD. I'm desperately hoping that the dose works. I'm finally starting to lose the moon face, the swollen chaos that has been me since 2009, now I'm back to square one. I was thinking yesterday that the body I have or how it looks isn't so important, as long as its working and healthy. I wish I had the healthy strong body! Hopefully I'll get back to it. And I'm loving how the Rachel zoe project treats the oscars like its literally life or death whether the right dress is on. It's the small things.
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2011-12-25T21:21:00.001-05:00

How to Heal like a child

Children are resilient, there is no doubt about that, but did you know they also have cure rates for cancer higher than those enjoyed by adults?

Maybe this is because people are more dedicated to children. No one wants to see a child die. Or Maybe, even, it comes from the children themselves. Their simplicity maybe? They do not have the everyday stresses of life that can impede healing, but still, that's ignorant to say, children have an infinite amount of knowledge.

Or maybe, it's something else. Maybe it's something special children share that adults have lost, like the ability to play, laugh, and forget they're sick when the time is right.
When sick, I try to think like a child, moving to do everything fun physically possible. There is a medication that's helped! Yes, there is hope in pill form with cesamet and marinol. Yes, marijuana helps. Don't stereotype against it. Its well worth the relief.
?
Thank goodness my cancer comes with some memory loss. I made a decision early to only look forward. There are things I can and can't change, and I can't change anything that's in the past. So I look forward and try to do double duty when I'm well, giving extra TLC when I can. I'm looking forward to more of those times...... After " plan save hillary" is on again. Then I'll drop it for some good timed relaxing and fun like a child.
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Happy Holidays

2011-12-25T17:52:00.001-05:00

In all my years of fighting, in over half a decade, I'd never once looked, mostly out of fear at what I would see, what it was like on the other side: the side of my caregivers. Ok, that'd be a lie. I'd think about it just enough to not be a pain in the ass, to be cute, compliant, even funny. Now, time has taken its toll. Making jokes and being easy to chill with are still important, but the people surrounding me, they've selflesslly loved me and keep on loving, despite having to watch their nightmare come true. I don't know why today the reality crept in. The feelings must have been so strong. I had the best christmas ever. It felt unfilled and carefree with excitement. We knew we had enough to enjoy the holiday and each other. I just suddenly saw and felt the words like it's own message. Maybe someone was sending one to me, but it's gone. I'm feeling ill. I'm so excited to have had today with my friends and family.
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Best Xmas Present

2011-12-25T10:53:00.001-05:00

My hubby came through in a big way with the presents. He gave me the best present of all: he made me feel beautiful. He made me feel like me again: the youthful, healthy and happy me he married so long ago. much love and merry Christmas.

I'm a CAUSE! Check it out.

2011-12-24T14:06:00.000-05:00

I'M A CAUSE!!!!

Go to http://www.mythirtyone.com/darciegauthier

click on "Place an Order" and then "Shop Now" going on from 12/22/2010 to 1/31/2012.

I love them! Customize For your STYLE!!

Thank you, thank you, thank you.
My friend started a fundraiser ongoing through January 31st.

It's a Thermal Tote Sale!!

They make amazing gifts: stock up for birthdays and next

Christmas and to top it off, 100% of the commissions will go

towards me and traveling to NYC ALOT!!

Goal of $1,000 dollars in sales and 100 totes!!!

Go to http://www.mythirtyone.com/darciegauthier
click on "Place an Order" and then "Shop Now" going on from 12/22/2010 to 1/31/2012.

Thank You all for your help ♥ Merry early Christmas, they love me enough to keep me alive!

This is for upcoming treatment I haven't quite disclosed to the world, but will be coming ASAP. It's been difficult to coordinate care with the holidays and my illness, but my PET scan shoes I have cancer in my bones. I need to switch therapies immediately to remolid or thalidomide, and begin researching options

with Dr. O. I'm lucky he's "only" in NYC, but it's scary I'm going back on the treatment wagon.

Life is still good. I'm lucky to have the friends and support. Have a very merry Christmas.

Dr oc notes

2011-12-23T20:56:00.001-05:00

Dr O to the rescue! The trip to nyc was eventful. I had to get up at 5:30 and leave it 6. I got the front seat first off in the car instead of my grandparents, who weren't jumping at being navigator until we had to get off the highway and find an emergency place where I keeled over. Thank you comfort inn. At 8:30 I was throwing up, sweating. I took immodium, ativan, cesamet, kytril and bennadryl. I slep through the pain. I can guess thAt dad found everythingfine; he did when we went out, but I was a head full of drugged mush anyway. Except for some notes: 2 therapies:1. register me for thalidamide, if not certified call owen, 2. H dc inhibitor clinical trial. Starts feb! Just finished in this disease. Bone cancer: stop sgn; thyroid causing fatigue. Trial temporarily: revlomid? Marc focus on fixing fatigie; revlomid or lenilidomide . Nurses need to start approval for lenlomide. Oral daily 40-50 percent feel better. Keep off chemo as long as possible. Need endocrinologist!!!! Chemo prescribe: lenolidomide 10 mg po qd indefinately/ check TSH- see endocrine. I'm still incredibly intimidated that this is the info I need to convey between doctors- people with degrees at took 6 years longer to get, but I know I can't wait. DHMC is on it. Dr Lansignan, who is very good, has been speaking with him while my doc is out until jan. Everything will go as it should. I'm happy its Christmas.
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Happy with my haircut

2011-12-21T10:13:00.001-05:00

FINALLY, some volume is infused next to my smile. I can't get over my hair! Yay!

Dad-date

2011-12-20T07:51:00.001-05:00

Hi Too all Merry Christmas to all. Hillary has been going to New York University for her new Drug--SGN35. We have been calling it the miracle of 34th street!! The hospital is on 34th and Lexington not far from the empire state building. I have actually gotten very comfortable in the city. I thought this Farm boy would never like Gotham City or the evil empire! She started the new protocol in August and has been doing Very well with it. She did the same treatment at Dartmouth 2 weeks ago. It was the first time Dartmouth used that drug. Another ground breaking 1st for Hillary. She decided that she will switch back to being a Yankee Fan since the treatment in NY worked and Dana-Farbers in Boston Did not!! Since August she has felt the best she had in Years. Her energy had come back. the Treatment every 3 weeks did not have the sickness that chemo had brought so she was feeling good for about 18 of the 21 days between treatments. She had a PET scan in October. 1 Doctor read it as the cancer being gone but 2 others said it was faint but still near the Kidney. She has been constantly fighting infections and has a weak immune system.Hillary was feeling good enough to take up a job writing articles for a weekly local paper. She writes about 4 articles a week. She is also making jewelry to keep her mind going. She just got notified last week that her Novel was going to be published! I am looking over the contract to see if it is the real deal! (It's not. It's a scam. Boo Tate Publishing!) I have several copies of her first book," z and the cancer Meany". I hope to send a few out if I can find some time. As you could have guessed there is always more to the story. I am always slow to write when things are going well. I guess it is just my nature. I was really starting to believe she had the cure till this week. Hillary is back in the Hospital again. We could not understand much of what she was talking about. She would fall asleep in the middle of a sentence then started sleeping in the middle of a word! They did another pet scan and the cancer has definety returned, It seems to be closer to the liver and the kidney. Her urine " looked like coffee" today. Holy shit here we go again! The doctors have about as many thoughts about what is going on as she has organs. They think the radiation from 5 years ago may have fried the adrenaline something, the thyroid is not working correctly. They are doing a battery of tests tomorrow. They have increased her doses of Steroids already. We are at wits end again. I thought that this Christmas would be nice and smooth this year. .I am doing this update in 2 days because things are moving quickly. Today she had a colonoscopy and a endo--- something. No she was not full of shit!! That stuff they gave her made her dehydrated. They did find an infection in the esophagus. She has been on an antibiotic for a while. We now have an appointment for thursday with the "inventor" of the drug in NY. Dr O has several other treatment ideas that he feels will work. Dartmouth was running out of options. NH just hasn't seen many people like Hillary. Actually I don't think many people have. We are hoping that she will be home for Christmas. That was Xanders Christmas wish 2 years ago!! I think he better wish for it again.I am still confident she will overcome again. She is not invincible but she is darn determined to see Xander grow up. He is playing some mean basketball now. Just the way Hillary used to play. Fast, great Defense and a ball of energy. She has given him a lot of her traits and has taught me a thing or 2 about how tough you can be. I thought I was a tough player in my younger days but I have to say Hillary has me and almost everyone I know beat when it comes to being tough under pressure. She has something to admire.Thanks for all your prayers and thoughts. I was supposed to be getting out Christmas cards but I decided to write a Christmas E mail instead. Here is to all of you for a very Happy Holy and Merry Christmas and a splendid New Year.Vic Nancy, Grace and Patrick, Allen Heather, Pierce and Preston, Jon, Xander and especially Hillary-

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Scrooge Boerner speaker of the house

2011-12-19T07:01:00.001-05:00

I've been up sleepless from steroids hearing that House speaker Boerner (rep) has delayed voting on whether or not bush tax cuts should comtimue past this week. Lack of passage could possible costing middle class families $1000s extra in payroll taxes and cuts in unemployment. Boerner's excuse for his last minute change? He says he's unwilling to vote for only a 2 month extension and revisit the both. Instead, he wants to decide after his holiday break, relaxing comfortably warm and fed while americans everywhere can continue their constant worry. This man pledged his vote to close voting for the house so people would be given for stability, to survive winter and he has the audicity to try to pull a bait and switch so he can hurry home to his comfy, warm home full of food. If this is, in fact, the worst congress ever, we know one of its leaders. Scrooge Boerner himself.
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Hospital day 2

2011-12-18T07:28:00.001-05:00

I thought I was in luick when thee iv team came in, took a look at my arms, and said, "where's good for a long stay?" Psyched he would e so considerate of MY functioning, I slapped both hairless forearms making sure my blue blood vessels came to the surface. An iv in the forearm means I move freely, actively, not a patint tied to the bed. Instead he saw the veins staring from my antecube/ac/behind the elbow. The most obvious of all, generally for emergencies when a hot pack and time isn't on your side, its awful for patients. Movement is restricted. I can't bend my arm wiithout setting off alarms. Ugh, and that's where it is. I was awoken at 5 for blood, rning rounds, vitals, etc and will prob fall asleep. I just wish I knew what this prob was? Addisons? But too late to tell bc they started steroids without question, but steroids have donewonders. My 1/3 of a lung appears clear, but if it doesn't materlized ro a full pnurmonia does that mean no pnuemonia would. Have ever occurred? Doubtful. I'm hoping were predicting these illness better and preventimt its been f years, If I don't feel better should I head to ny mon? Can I call dr. O on a wkend. Of course I can, that doesn't mean I'll get him. Communication in health care is an abhomination. Dr.s from diferent hospitals don't talk, not even a consult summary. Ots left to the patient to find the doc make the request understand and relay back, like a game of telephone. its for the darkages and mistakes can be lethal. I almost died bc of miscommunicationsin the same hospital and the chart to prove it. Dr. G hear said he'd call, regarding many things my PET results, yes my results, Ill have another posting, but only appeared infinitesimally worse, and dr.o has contingency plans. The few past months have been the best in my life in a long time. I could be relied on. I was stable. Plans happened. Luckilly, I can still tell when x is really sick and needz a break. I have time for special tlc mommy care days, which are just as important as medicine to a kid, even if it does mean rescheduling a scan. These little important pieces are always what I hold on to. I'd consider saying I wish my life were different, but that would take for granted the full life.I have. Its just time to hibernate for sick season-until april
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2011-12-17T06:03:00.001-05:00

After weeks of exhaustion to the point I could barely keep my eyes open for more than an hour (not anyway to live a life) and discomfort from everywhere, I'm finally in the hospital. There's been something wrong with me, but nothing so serious that I could put my finger one. When I finally started with a sore throat (viral) than a dry cough that turned in hours to a phlemgy productive cough. I don't mess with my lungs. I certainly don't mess with pneumonia. I was in the hospital in an hour or to getting ready for my vanco and zosyn iv cocktail. Thank goodness I can take those. They're big gun broad spectrum leaving no bacteria unkilled medications. Its great I got them yestErday, before I thought I was really sick (my family thought I hit really sick weeks ago) because today I'm hacking worse. Had I waited I'd been at home miserable, probably with the shakes, not wanting to move. I'd have to get "helped" out of my house. But I'm not. I'm here! And I'll be great for Christmas! Wanted to have jewlery sales but my body decided no. I have lots at The Java Cup, even $5 deals. Check it out and get a great cup of coffee or maybe you can see me sunday? We'll see.
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Hanging in

2011-12-15T22:25:00.001-05:00

I've been just hanging in, not feeling really good anywhere. I always have plans, ideas for the day, and since I've been sick, they never accrue to much more than a nap. I have been writing for the News Review, which I'm enjoying. I've been writing in its weekly publication, and I get some carte blanche to choose what I write, as long as I control myself. I like it mostly, just a few kinks. I'm just excited I can do this. I can meet deadlines. It gets me out of the house. I feel like I'm evolving as a patient, reader, writer
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Taking a PET Scan Peek

2011-12-13T19:57:00.000-05:00

Like it? Check out cafepress for more
or email moi: hill.stpierre@gmail.com

I'm hoping to get healthy enough again to do more activism! It always makes me feel empowered, and I need all the power I can get.
It turns out, I probably had a virus since X stayed home from school today. I was defiantly anemic. I had a kidney infection too. I've been a minor train wreck, but I'm doing pretty well.
I'm getting a PET scan tomorrow partly due to the kidney infection that I shouldn't have.
The thing came out of nowhere!
My last PET scan, the one that looked mostly clean except for a line of nodes around that same right kidney, was read differently among my specialists.
Two out of three agree. . . . it was probably cancer with some regrowth alongside the remission.
I like the third Doc's opinion best so I took his. HE said it was likely a virus.
Since I'm having problems, we're taking a peak tomorrow.
Also Happening tomorrow is NH Executive Councils vote to accept a $333,000 Exchange Planning Grant. Pray, write letters, email, call. It'd be silly to refuse this grant with no federal payback strings attached and no commitment to do anything with the study information in the future.
It's an opportunity to research what would be the best insurance marketplace for NH citizens in the future.
Knowledge is power. I'd snatch this opportunity up.
For more knowledge, There is also an economic summit that is open to the public in Concord this Thurs. Experts are coming in to explain what is necessary within the budget and why.

Sickies in the house

2011-12-13T12:12:00.001-05:00

"This is the best dream ever, because you're in it." X said to me, looking at me with his sick droopy eyes, mouth hanging open and sniffling. I've been sick for the past week,Weds and thurs. I couldn't wake up. I was exhausted. Fri after getting fluids I discovered I wasn't just dehydrated because of my nausea, vomiting, etc., but I needed blood too! Needing transfusions was my primary issue. I've probably needed transfusion in the past. One week after treatment when I start to feel cloudy and sleepy. I'll fall asleep mid convo. Very disturbing. I've been battling towards getting well. I avoided becoming an inpatient yesterday by telling my NPs I had an important basketball game I had to be at: my sons. It was important too. It was x's first time paired against a much bigger boy. His first big sports disappointment. It was also the first time I ever entered a room he was in, seen him making friends (including with big boy) and got the look that said "Puh-lease don't embarass me. Don't even let them know were related.". These were all moments I wanted to be present for and didn't know if I would. I wanted to see x get old enough to go somewhere and not need me. It's a feeling of sadness and success. It shows he's capable of being without me happily if He's capable of socializing and talking to the opposing team easily. I've done some of my job, but he's growing up! Tear. When faced with possibly not having these times since he was young, I've thought of many times I wanted to be his rock, his support, his shoulder to cry on. Even the "bad times" are better, if more important, than no time. I hate hearing when battling whether to be admitted or leave unsafely to enjoy an event that, "this is what we do all this for," which I know my np thinks is soothing, but just reminds me of how temporary she sees this. I disagree. I'm just really thankful that I'm here to be there for days when he's sick. So we can hold each other tight and he'll know the world is safe and secure.
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The Gratitude Attitude

2011-12-11T07:37:00.001-05:00

I think I found a way to dig myself out of the irritable funk I've been in. My angry, pity party has been going on a little long. I've been complaining more than usual. Judging others. Forgetting the great things we have.

It's been over 9 weeks now since the incident that set me off. Jon had a talk with me that I was being curmudgeonly and I agreed. It was time to pull myself up by my boot straps, get my game face on, and enjoy all I have, which has been my secret to surviving, happily, even when in the worst health imaginable, this whole time.

I call it the gratitude attitude and theorized that being thankful for friends always and the small wonders, being able to walk, stay awake a whole day, warm showers, and fresh fruit, would help me overcome the depression I'd have if I focused on the dark side: what I've lost, what we don't have, etc. etc.

So here's the plan, in article style of course, I need to find someway to get the best of both worlds:

Beat The Blues with the Gratitude Attitude

If you’ve come to find happiness, start counting your blessings, you’ve found the right place, and now that you found help, keep counting those blessings. Science says it’s good for you.

Science is proving having a gratitude attitude: counting your blessings, looking on the bright side, and overall optimism can revitalize you.

While it may seem like common sense that positive emotions, like gratitude, beget more positive emotions, it’s only been in the last couple years that the study of happiness has seen a surge in popularity.

What’s been discovered is that gratitude is one of humanity's most powerful emotions. It makes you happier and can change your attitude about life, even if it’s dragging yourself out of a funk or helping recover from a divorce, like an emotional reset button.

Robert Emmons, Professor at the University of California, Davis, who pioneered research on the benefits of positive thinking states there are studies showing even pretending to be thankful raises levels of the neurotransmitters associated with pleasure and contentment: serotonin and dopamine, the same commonly chemically copied in anti-depressants. Better than popping a pill, giving thanks is a potent emotion that feeds on itself, much like being victorious, creating a cycle of self-stimulated happiness. Gratitude is the gift that keeps on giving. Convinced? You should be feeling better all ready with all the good news I’m bringing, but where do you start? 1. Cut the complaints. Limit complaints to a certain amount of whines during a set timeframe. For example, give yourself one complaint each morning from getting out of bed to going to lunch. Then work towards getting the gratitude attitude. Eventually stop complaining, replacing whines with happy comments, even if the complaint is there it will be overpowered by the stronger emotion. 2. Fake It Until You Make It: Prof. Emmons states, “Live as if you feel gratitude and soon the real thing will come.”

3. Remind yourself of things to be grateful for. Keep a log of everything that brings you joy. One major study showed that people who wrote down what they are grateful for felt 25 percent happier after ten weeks than those who did not. They even felt better about their jobs. Another thing to be happy about: studies show logging once a week makes people happier than doing it three times as much.

4/5. Make It Visual & Recruit the Family. Create a collage of what you are happiest for, and display it prominently. According to Emmons, a great technique for children is creating a thank-you “tree,” adding post-it note “leaves” every day to acknowledge everything good imaginable, which will also encourage good future behavior too.

6. Practice daily acts of gratitude. When we think of, remember, talk about wonderful and happy moments, we feel uplifted. Keep the feeling by pausing and listing three things you are thankful for and three people to whom you are grateful. If you’re a beginner, it can be done indirectly by finding three things that could be worse.

7. Be happy in spite of unhappy events : There are few absolute truths, and one is life isn’t fair. Good thing we can learn to be happy in spite of problems with two steps. First, after an upsetting situation, don’t react. Try to stay calm. Ignore the person. Walk away. Research. Cope however you can without blowing your top. Then, when the urge to freak out lessens, start listing the things about the situation for which you can feel grateful, even if it’s a lesson learned.

8. Look at your present through the eyes of your future: Your perfect future that is, and imagine only the best, this is your life, your mind, and good creates more good.

9.Write/Give a Heartfelt Thank You: Spread the joy in a “power thank you.” First, thank whomever specifically for what they did. Next, acknowledge the effort it. Finally, tell them what their actions mean to you. This will help others feel valued and will help you feel better about yourself and life.

Why giving thanks is good for the psyche

http://www.huffingtonpost.com/2011/11/22/give-thanks-health-psyche-brain-emotion_n_1108590.html

Emmons Lab Media http://psychology.ucdavis.edu/Labs/emmons/PWT/index.cfm?Section=7

How To be Thankful and Improve Your Life. http://www.rd.com/health/how-to-be-thankful-and-improve-your-life/

Gratitude Chases the Blues Away http://www.rd.com/health/gratitude-chases-blues-away/

Going, Going.....

2011-12-09T17:15:00.000-05:00

Gone! what you all just witnessed, folks, was me getting sicker and sicker from anemia, a lck of red bood cells fter therapy which Anna and i thought we ovoided by taking procrit last week. too tired to post now.

Being sick stinks

2011-12-08T19:57:00.001-05:00

I've been so sick. I've slept and slept and slept some more. I ate an orange, turkey slices, and noodles. I had some sips of drinks. All that in 48 hours. Tonight I tried to eat chicken and potatoes j and x made before they left to bball. I had some, but then feeling sicker, went to my room. I started to dry heave, almost vomiting, my whole body tensing violently. When this happened my tummy would act up and I thought I may need to sit on the toilet with my head in a bucket, because the loud vibrations coming from my behind were threatening to let loose. Then sick, miserable and in pain again, I started to cry. I don't know what's wrong with me. I've slept 48 hrs like a coma. I have sweats and chills but no fever. I was considering rhabdomyolysis bc my body aches. Then, I smelled something, and it smelled awful! It wasn't cancer. It wasn't fever. It wasn't bacterial or viral infection. It was just disgusting and where else could it be coming from but me? So I cried some more and hysterically dialed my mom. "I don't know what's wrong with me!" I wailed, "I need you to check on me!" But all she heard was, "I DON'T sob sob sob, some unintelligible statement". And I smelled so bad, I couldn't take it. My own sick smell was going to make me throw up uncontrollably. "What?!" Mom asked. "I need you to check on me" I said and with that I hung up and stuck my nose in an orange to avoid my own stench. Mom came quickly and crawled into bed looking for xmas cartoons as I told my tales of woe when suddenly, mom looked over and snapped, "Nika (my dog), why do you smell so bad? You have awful doggie farts!". It was only then I realized all the sobs about me being so sick I stunk to high heaven were untrue, bc I wasn't alone, my dog had been there stinking up my room! Part of my illness solved! I called dhmc earlier to reschedule my therapy. I'm not having it dec. 22 when it can wait until the 26th, but instead I confessed my illness and bought myself fluids for 9:30 tomorrow. At least I don't stink.
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Ouch

2011-12-08T12:00:00.001-05:00

I did it to myself again. I'll never stop doing it. I felt good. I played hard. I felt like a normal person for one day then the next, with j believing I really may be as healthy as I seem DAILY, he assigned me to do some banking the next day like all our finances would crumble if we didn't take x amount of money from one bank and place it in another. Simple right? No! Not when you need ritalin, morphine, ativan etc to feel normal. Not when you've had over half a decade of treatment and you're sick and exhausted. I did the damn banking because one of the banks doesn't play well with the other online. Then I ran to get some emergency jewelry making supplies at walmart (never ever again I don't buy jewelry stuff there), but in the express check out, that's when my body attacked like a ninja screaming "you! Go home. Go to bed! Now!" I felt it in my weak legs, but worst, I felt it in my bowels, in my stomach, because I can't have one without the other. Then, and I knew it was coming, the hot sweats. Hot flashes so bad that rain just blended in. I managed to make it home, to get to the bathroom and. fall asleep before hitting the couch. But like so many times before, I couldn't wake myself hours later when I needed to get x. I couldn't hold open my eyes. I made an emergency call to mom who found my sis in law to get him. When x got home, I still wasn't waking. I called j, fell asleep on the phone, woke up to "what's wrong with you?!" And j came home to take x to get haircuts. In the meantime, I'd promised x I'd make it to his game so when they got home I managed to eat without falling asleep and choking. I went to the car to go to his game and thought I might die. At the gym I started to cry, which is what happens when I feel awful but want to do something and my friend a. Was trying to care for me even though between tears I was saying I was fine. Her fam was even going to miss their child taking the jmp ball to care for me. I told my parents when they came my dad had to video tape and mom had to take me home then instead of following directions I tried to crawl up in a ball on the gym floor, which was pretty comfortable. My hysterical sick self had decided collapsing there was comfortable enough and no one was going to mess with a determined mom....... Except my own determined parents. I ended up going home and passing out in bed. I woke up this morning and got x to school then fell asleep. Its 11 now and I think I should just keep doing nothing.
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2011-12-05T20:49:00.001-05:00

I don't know what is wrong with me, but whatever I do, which is everything I can do to stop people from having to suffer the way I have, it is never enough. I reach a goal and am only satisfied for a moment, because I remember how hard life has been and is still. I can't rest because I want people to be able to fight their illnesses without fear of losing their homes, bankrupting their families, and becoming homeless from foreclosure. I don't want anyone to ever have to choose between food and medications, cut their dosage in half so it extends longer, or go hungry and get weaker and sicker because they feel the helplessness of not knowing how they'll feed their children. I don't want anybody to feel imprisoned in a relationship that is emotionally and physically destructive because they need insurance. I don't want anyone to have to plead through tears with registrars, physicians, pharmacists, secretaries or nurses to access care or get a life saving medication. I don't want anybody to feel forced to accept treatment that they know through scientific evidence is not the best, most effective, safest treatment available because it is all that is available at the hospital their insurance has dictated is in-network. I want it to be self evident that the constitution states we all have the "right to life, liberty and the pursuit of happiness," and with health status being the number one determining factor of happiness in people over 50, know that health care is encompassed within these rights. I want it to be self evident that people are more important than profits and that a country is only as strong as its weakest citizen. I want to be able to relax knowing that even if cancer continues to attack every other man and one in three women, that the safest most effective quality care that gives the greatest chance of survival will be available to everybody despite socioeconomic or insurance status. I want to know that people will no longer die from being turned away at ERs, waiting neglected in waiting rooms, or being treated continually for superficial symptoms that any insured person would have diagnosed as life threatening. I want to be able to find a place to stop this list and rest assured that others will be okay, that someone somewhere will make sure others do not suffer as I have, even if it's through a miracle from the hand of God. But until then, until that time comes when people regard people as people regardless of health status, I can't relax. I can't stop fighting or praying that someday these simple wishes for people to care for other people more than all else will come true.
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My first ponytail in 6 years!

2011-12-05T14:44:00.001-05:00

All the fighting and irritation with my hair has been worth it! I've finally grown it into a ponytale!

Hosp budget/ therapy pilot

2011-12-04T14:11:00.001-05:00

To understand the dire situation hospitals are facing, it's important to understand the process that started the whirlwind decline. This past July, the NH budget passed within which was included new stipulations for the 5.5 percent bed tax hospitals are required to pay. in previous years, the 5.5 percent was given back to the hospital allowing for a small safety net of an operating profit; and thereby, the ability to treat the uninsured or undercompensated paients with medicaid or medicare without facing bankruptcy. However, this years budget opted not to return the 5.5 percent tax instead diverting it to other, areas of the budget, such as infrastracturee and energy improvements, turning what had been a small opporating profit into millions of dollars in uncompensated care, which almost immediatly began effecting patient care through longer wait times, etc. Oddly, Smaller critical access hospitals in the state were noy affected. Criticall access hospitals eccept difficult patients but my not be able to give the treatmean According to Dawn more lay offs are set to occur this week at the health care giant."People fly here from Bermuda for treatment or drive 8 hours from Maine for Bone Marrow Transplants, which aren't offered in that state."*** trauma focused theray pilot program. In claremont. Rosenburgs and dan ferara involved. Across the state at community mental health centers therapists are being trained to provide trauma focused effective therapy through a state provided grant for the pilor program.
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X's Christmas Wish Miracle

2011-12-04T08:45:00.000-05:00

This is one of my favorite stories. Some of you loyal readers may have heard it in pieces before, but it 'tis the season to remember magic exists, wishes come true, and miracles are real.

The first time I heard the wish was in April, a full eight months before Christmas, when most children have forgotten that Santa is watching and are busy planning their April vacation.

Christmas two years ago when X made his lifesaving wish.

My Son, X, and I were sitting around on the floor, playing games, when X said seriously, "Mom, for Christmas, I am going to ask Santa to make you better."

"WHAT?!" I gasped, shocked.

“Where did this come from?!” I thought to myself, and worse, “How does my son know that he needs to ask for a miracle for me to be healthy?”

I thought we had done well hiding the fact my Hodgkin’s Lymphoma was “incurable,” and therefore, “terminal,” but as so many parents do, I had underestimated what my son understood.

"I don't want toys..." He continued, nonchalantly, looking down at the toy he was playing with, "I just want you better."

Then the tears started to well up, and my heart started to break. He was willing, at the tender age of six, to give up all the toys in the world to ask for me to be healthy.

I finally got myself together to talk to him.

"You know you don't have to wait for Christmas to ask." I told him.

"You don't?!" He yelled, looking up quickly with his big brown eyes staring, curiously, like I had the answer to the all the world’s problems.

"No, you don't have to wait,” I said, “because God is Santa's boss. He is around all the time. Santa is a helper for one night."

"So we can start writing letters NOW?!" X screamed delightfully, half asking and half demanding.

"Yes, we can write letters, and we can pray every night..." I said, trailing off, dreamily, thinking about the possibility of my own mortality, and how it was affecting my little man.

Xander cut right into my thoughts, ready to start his letter to Santa, asking for me to be healthy, and praying for me to get better.

After his April request, I constantly did the math to see if I could be healthy for Christmas.

In August, I started a round of chemotherapy that required infusions every Monday for two to three months with the guarantee that I would be sick and hospitalized during active treatment, but possibly putting me in remission for November and the holiday season.

Our 2011 Family Holiday Picture.

However, instead of getting better with treatment, I got worse. My lungs began to fail in August, and I underwent multiple biopsies and surgery to diagnose the problem. By the end of November, I was undiagnosed, oxygen dependent, relying only on a third of a lung to survive, and at 26 years old, instead of a miracle, I was thinking about stopping my medications and allowing nature to take its course.

But in the back of my mind I kept thinking about X’s Christmas wish. Angrily, I wondered how God could do this to a child that put all his faith in him and Santa Claus asking for one selfless thing for Christmas.

But X never got angry. He never gave up hope. Instead, he kept reminding me that I’d be better for Christmas.

On Dec. 5^th I was finally diagnosed with Bronchiolitis Obliterans, a life threatening complication of bone marrow transplantation scarier than cancer itself.

On Dec. 22, sicker than I’d ever been, I was wheeled into my Doctor’s office. Seeing the state I was in, he recommended immediate hospitalization. Instead, I burst out crying thinking I could miss my last Christmas with my family and asked for prednisone.

Steroids are a double-edged sword in cancer care. Prednisone would alleviate the inflammation causing my lung failure, but it also would almost ensure my cancer would return.

The answer was easy. I opted for steroids.

The prednisone worked like a miracle. I could eat for the first time in months. I could play games with X. We were able to do all our Christmas traditions together, and X saw that with his determined faith his Christmas wish had come true.

It’s been two years now since X made his Christmas wish. He still remembers all the letters to Santa and prayers to God he said for me to get better, but if he ever starts to forget or lose faith, I’m still here to remind him that God and Santa grant miracles, especially for Christmas.

Normal treatment weekend day

2011-12-03T21:12:00.001-05:00

I had a normal trtmnt wkend day. I woKe up. Played around. Made sure c and x were fed and ready for bball practice by 8. I recreated my jewelry displays since a store wanted them all (go me!! Cheer on the hillary). Then j and x got home with our friend's daughter who still trusts us with her kids even though poor x got forgotten at school thurs. I thought j had taken care of it. J thought since I'd be home from treatment, I'd get him. Oopsy, we forgot our child. Good thing we live in our small community where the teachers joked with him while j scurried out of work. We're so fortunate to be surrounded by good people. Instead of leaving hysterical he left saying he needed to stay to make coffee in the morning. I didn't wake up for 24 hours. Today, I tried to behave "normally" I went to one of those scentsy and 31 parties. Its been a long time since I charged out into the world, alone, to a party even mid afternoon. Then everyone seemed to have other parties scheduled afterwards: ugly sweater parties, kids birthdays, 30th bdays, and I began to wonder where the hell I'd been that ugly sweater parties had become normal. Then I remembered, I've been forcibly turned into a hermit out of fear for my life. Luckily I've been perfectly content in my bubble, but I used to be such a social creature. Now I'm fulfilled by my friends, writing, family and facebook. I think, hope, maybe, that this is just a normal part of adulthood. Though I'm pretty confident, I spent my 20s and all the maturing is was supposed to do, in confinement. Maybe I was just resting up for mt 30s? Who knows, but I plan to find the energy to go to another cheesy women party, discovery toys, tomorrow. Next week, I'm thinking sunday, maybe I'll have a jewelry party of my own for the holidays next week. Maybe. Anyone want an invite? I have gorgeous pieces.
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Good am

2011-12-03T01:18:00.001-05:00

I did it again. I screwed up my sleep schedule. After getting therapy at noon yesterday I was put into such a deep sleep from my ativan/benadryl premeds that jon couldn't even wake me up to take my bedtime medicine. Clearly I woke up wanting to scream in pain, every muscle or joint screamed don't ever do that again! Boo I'm not sure what I can do to avoid it next time. Those meds are too powerful. I woke up this am intending to sleep but my rn from yesterday called a little nervous asking if I could get back asap for a procrit shot that was overlooked. So hush hush mom becky and I hurred. Then we went to Joannes, because I luv it amd can't stay away, especially with cpoupons that make it almost free. I'm getting sleepy Maybe it really is time to sleep. Blessings, hill
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I've been missing everybody and I'm back.

2011-12-02T14:22:00.000-05:00

Upcycled snapple cap pendants $10. Any picture
Go to hgrace.etsy.com, comment or email
hillaryst_pierre@hotmail.com to get it in time for the holidays

Oh, blogger friends, who I've missed you among my frenzied endeavors.
I started a job that I went crazy with. I don't know how to be anything other than an over achiever, but I'm cutting my work down to only 4 or 5 stories a week. NO MORE I TELL YOU.
This way I can focus on the things that make me happy and relax: hanging out with X, writing whatever I want to all of you, creating pretty jewelry, WHICH CAN NOW BE FOUND AT THE S. ACWORTH STORE!
We threw a surprise 55th bday for Dad the weekend before thanksgiving. Then thanksgiving was fun chaos has the family was all in town.
That weekend the men scrambled to finish my bros foundation before the snow came so they'll have a place to live this winter.
My cuz, Steph, is getting married so we've been busy dreaming up the best looks and places for her dream wedding.
I've also been talking a lot to a 27 year old friend who has been recently diagnosed with osteosarcoma of the spine! She's headed to Mass. General for weeks of radiation before surgery and chemotherapy. She's hoping her 3 kids and moth-in-law can move with her. Please say prayers so she can continue to be a mom with she fights this horrible disease.

Still here from cleaning out my closet. Classic coach bag,
be the envy of friends $65 or Best offer

Yesterday I had my antibody therapy, which drugged me to high heaven to the point i couldn't function to get X to school today, but my plans to sleep were foiled when I was told my procrit shot (to increase my Red blod cells and hopefully give me some energy) was forgotten, so I had to make the 40 min. trek back up with my mom-in-law, where again, I didn't sleep. I tried to nod off on the way home but couldn't. Then steph was waiting at the house to go get her gorgeous engagement ring sized. I' so excited for the blushing bride.

Beautiful silver pendant with your choice of charm waiting
for your favorite picture. $20 gets custom piece with your choice
of color bead or charm.

I've all ready committed to picking up x, who got forgotten about at school yesterday as I was unconscious from my medications and thought Jon had it taken care of, but obviously we'd forgot to communicate. Oops. The school called J at work to come get him. I felt so bad for my little man, being forgotten in the chaos.
Then after I get X we're going to get C, his cousin and best friend, to start the Fri. night party. The first Fri of every month the GCC holds a fundraiser party for 9-14 year olds. $5 each gets them in for a dance, live band, flashing lights, friends, pool, even video games like guitar hero. They're excited to be going.

Comes in gorgeous gold fill too. Pick your picture and a
charm, again only $20. Extra may apply for charms.
email hillaryst_pierre@hotmail.com for your holiday creation

We're excited to see them going.
I'm glad I'm being forced to calm down my writing. I don'tknow how to work without being a supper over achievor. Limits are good so I have time to do pieces for the post.

Found another bag hiding in the closet,
classic, large 14"Lx15.5"W
Louis Vuitton. Fabulous. $150 OBO

I've submitted one recently. It's an innovative idea in a column. I haven't heard much, but I'm hoping it's being discussed. I plan onsubmitting X's Christmas Miracle and "Can Communication Cure Health Care?" but all this comes along with the Christmas season, Christmatizing, wrapping, and making pretty things. I have been approached to be teach jewelry making classes at Joanne's in Leb, but I'm not sure. I'd love to have an upcycled display at TLC (a consignment shop on tremont square) in Claremont, but my display stuff went with my jewelry to S. Acworth. Hopefully I'll be successful this season. I'm so excited I feel well enough to do all of this, and it's all thanks to the love, prayers, and support you have all given me through the years. Keep it coming. I wouldn't be wear I am without you. Much love,

Hill

Comics Teach Science; How Technology can teach

2011-12-01T06:31:00.000-05:00

Check this out yourself at: http://cosmiclog.msnbc.msn.com/_news/2011/11/29/9094878-bam-how-comics-teach-science

No Starch Press

"The Manga Guide to the Universe" surveys the cosmos in comics

** I LOVE this article. It's about time math and science got cool in the

United States. X learned major math skills by playing bakugon. He can still add and subtract larger numbers faster than his teachers.

I also love the hyperlinks and suggestions, but if I could ad some of my own:

If the published comics are too advanced for your little aspiring scientist, Toondoo.com allows you to create your own cartoons for free! All you have to do is register.

Also, if you want some preconceived notions regarding technology erased, read Everything Bad is Good for you by Steven Johnson.

After years of struggling through dyslexia to educate myself, and now my son, I'm proud to here these "alternatives" are finally becoming main stream.

By Alan Boyle

Can you really learn relativity from a comic book? The Japanese have been using manga for decades to teach complex subjects, and now Americans are doing it too.

No Starch Press, a San Francisco publishing house, puts out awhole line of manga-style books on math and science, picked up from the original Japanese and translated for the American market. Yes, there's a "Manga Guide to Relativity," as well as calculus, linear algebra, biochemistry and other head-banging subjects.

The plot lines may sound sappy to grown-ups. Usually they involve a cute schoolgirl or schoolboy who's challenged by an equally cute teacher to master a seemingly impenetrable subject. But Bill Pollock, the founder and president of No Starch Press, says the books get the job done, especially for students who are at a crucial age for math and science education.

"We're not out to publish the best manga ever," Pollock told me. "The manga is a vehicle."

Educational comics are nothing new, of course: Classics Illustrated, for example, was delivering comic-book versions of English lit and science class back in the '50s. (I still get the heebie-jeebies when I recall the Classics Illustrated version of "Jane Eyre" that sat in the comic-book box at Grandma's house.) More recently, cartoonist Larry Gonick has been using the comic-book format to explain subjects ranging from chemistry to physics to sex. This year, one of the items on my holiday book list is "Feynman," a graphic-novel biography of the bongo-playing physicist.

But manga books come from a different cultural tradition — the same tradition that spawned Pokemon, Hello Kitty and other Japanese imports that American kids have grown up with. In Japan, there's a manga subgenre ("gakushu manga") that is completely focused on education. These books, which range around 200 pages in length, are the ones that have been adapted into English-language "manga guides."

Japanese researchers have reported that manga books can deliver information in a shorter time and make a stronger impression than conventional textbooks. "Manga's textual hybridity is utilized to promote the readers' effective learning, as verbal and iconographic tests place multiple layers of information in context and project a focused content," Satsuki Murakami and Mio Bryce wrote in the International Journal of the Humanities.

"I look at it as a lecture in a book," Pollock said. "It's as if you're in there learning together with this cartoon character."

The lecture can be tough sledding at times. There's no easy way to have a cartoon character utter dialogue like this: "A Lineweaver-Burk reciprocal plot is created by ... finding reciprocals for all the numeric values on the horizontal and vertical axes!" But Pollock says he's seen the manga technique work, particularly for teenage girls, who tend to lag behind teenage boys when it comes to interest in math and science.

"I've always liked the idea of exposing people to something exciting, and higher math is exciting," he said.

In the past few days, there's been a debate percolating over how the genders are portrayed in science education — as seen, for example, in the marketing of "science kits for girls" that focus on perfumery, cosmetics and spa care. Some have raised concerns about manga as well, in part because of the short skirts and ditzy demeanor sometimes exhibited by the female characters. (To be fair, manga boys can be just as ditzy as the girls.)

"Some people think manga is sexist," Pollock said. "The reality is, I've had multiple parents come to me and tell me that their daughters love the books and now they're getting into math and science. ... We may look at things one way as adults — but for kids, it totally works."

STEM education — that is, education in science, technology, engineering and math — has been a hot topic lately. What totally works for you? Do comic books fit into the equation? Whether you're a student or a teacher, a parent or just an interested grown-up, feel free to weigh in with your comics ... er, comments ... below.

2011-11-30T20:31:00.001-05:00

Thank you Lorraine for reminding me why I do what I do. I'd forgotten that life isn't really about me. I'd forgotten that the people who need me most are the ones who can least afford it. I'd forgotten that I would day dream in junior high about finding the cure for AIDs and somehow giving away the chemical formula for free so any chemist on any continent could create it cheaply instead of having cures owned and lives held hostage for profits. Back then, I imagined getting it published in newspapers throughout the globe, but knew the internet, in its rudimentary state, was my best hope for information dissemination. Even though I'm not sharing chemical recipes, I think sharing coping mechanisms, new therapies and innovative doctors information accomplishes the same thing. I do believe communication can cure a lot of health care's woes, and I'm still on a mission to connect people to others so we can guide and support each other. I forgot how much better it feels to give than to receive.
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Cyber Monday Sale: Customized Etsy Goods

2011-11-28T08:53:00.000-05:00

In the spirit of Christmas, why not buy beautiful gifts that do double duty: helping those in need and making a great present.

I'm having a sale on my etsy site, www.hgraceewelry.etsy.com right now! Get 15% off your entire order by entering BLCKFRI in the promo box.

Some of my new goods include customizable upcycled pendants made from snapple caps, art, pottery.

If the upcycled pendant isn't your thing, I'm also doing customized pendants with any picture you want.

Your picture can be placed in a circle pendant and then overlaid with resin to last a lifetime. Charms are also available alongside the pieces. Choose from silver or gold fill. The only limits are your imagination, and well, my inventory.

And good luck finding these babies for less: Upcycled Pre-made Pendants are $10, customized are $15 and for the more professional look, special for the holidays, it's $20 with a basic charm (cancer ribbon, words like hope, create, imagine, or angels a simple stone in just about any color). Other charm options can be discussed at ordering, such as gold or tiffany blue 4-leaf clovers, a horseshoe, gold owl. With the cost negotiable. Just send me a note.

Plan X: I've gotten a job

2011-11-27T08:17:00.000-05:00

My beautiful twin sister, Heather, with her very handsome family,
husband Allen holding Preston and Pierce.

I feel like I've been cheating on my blog with my new J-O-B. When I have to do things like interviews and make deadlines it's not as easy to sit and write about myself.

I'd hoped to find a way to make blogging pay, And it has in exposure with some great opportunities. I've accomplished goals that I never thought I would survive to even try for.

But as far as feeding my family and giving me the peace of mind I so desperately needed, it hasn't done that.

It hasn't allowed me to go to the grocery store without a handful of coupons and a gift card from a sympathetic loved one (aka known as readers I've met through here ;)) and go crazy buying the healthy food my body wants. I naively thought at one point that if I just let people know how difficult surviving was financially with a disease that people would help fill in the blanks, but that just didn't happen.

There are too many rumors and myths about reimbursements that even some of my former closest friends believe.

For example, I do get to write-off all of my expenses, but that doesn't mean I ever see any of that money back. Instead, I opt to not have any taxes taken out of my social security check so I can have the money immediately. I, essentially, pay those taxes with my write-offs.

We still do not receive any form of entitlements other than social security, such as food stamps that many childless, healthy workers receive. My SSDI is also less than my medical expenses every year. By definition, this means I am bankrupt and will never recover financially. If we get a $1000 back from the government we're extremely lucky, but that's quickly eaten up by more health care costs.

My fabulous family, Jon and Xander.

And as much as I love The Huffington Post, I'm not paid for those articles either. I'm a lowly blogger who does it for the exposure and excitement of being published. Maybe, someday, I'll find a way to make it pay, especially since writing is really the ONLY thing I can do professionally.

I was offered a job as a jewelry making instructor! But JoAnnes in Lebanon is too far away and my health still too fragile to commit to a certain time and date to teach closer.

When I was younger, I told myself I'd never, ever throw those crazy tupperware parties. I didn't understand them. I Didn't see the incentive.

Now, I realize I was just born to professional parents who had options to work instead.

I don't like the complaining, whining tone this post is taking. It wasn't supposed to be like this. I guess these thoughts have been weighing heavily on me for a while now. I had an awful incident recently where someone meant to care for me took advantage of me financially and my need to travel, but ditching the chick wasn't all I needed.

It was time for plan X, since Y has been over a long time now, and get a job while sick.

Since treatment has ruined my body and therefore the option for me to do barely legal porn (just kidding) I started thinking about a job.

Again, the big guy came through with a sign. I dropped the paper I was reading and it opened to a big advertisement for freelance writers in The Claremont Area for The News Review, which I'm so excited is working out really well.

The two that started it all: Mom and Dad Nancy and Vic
with the grand-kids and our grand-dog, Nika.

My job has given me the peace of mind. I was able to do some Christmas shopping, obviously during sale time because I'm frugal and that's just how it is, but it wasn't with the guilt of thinking I'd leverage our ability to pay our taxes or eat.

SSDI is also trying a new program that, gasp, allows sick people to work without immediately cutting off benefits! Not a surprise now since SS has tightened their practices, previously they threw SSDI at just about anybody, and since I submitted tax forms to work, I was sent an offer to join recently.

I can now make up to $12,000 a year without being penalized. Previously it was $10,000 with immediate cut-off for making more.

This was a serious reason for many disabled people who wanted to work but couldn't do their previous profession or even part-time to not work at all.

Now, if I make over $12,000 (not likely) my benefit is decreased by $1 for every $2 I make over the amount. I think this is a great start to overhauling the Social Security system without affecting needed benefits.

Something needs to be done soon without being drastic. If SS had the restrictions health insurance companies do it'd be a for-profit business.

I'm excited we may be headed for some good times. Hopefully I can keep you all updated. If not, at the very least, I'll submit my columns to you. I don't have the benefit of writing a general article yet, but I do get to pick topics in the news.

I'm always in need of ideas so comment or facebook me.

The whole family together for the holidays.

And I'm happy to report that we're healthy and
happy even though we still have finance charges that top what I bring home in a week, We're going to have a very merry Christmas this year.

Vtech Vsmile IMG00184-20111123-1240.jpg

2011-11-23T12:47:00.000-05:00

Great Present: Like New Vtech Vsmile Smart toy with controller. $25 OBO Games $5 each Alphabet Park Adventure, Finding Nemo Ocean Adventure, Blue's Clues. Take all for $35. Call Hillary at 603-542-5064.

Fisherprice smart cycle Like new IMG00183-20111123-1235.jpg

2011-11-23T12:40:00.001-05:00

Great present: Fisher price smart cycle, Like new, stationary bike for exercising and learning, comes with learning adventure game $50 OBO call 603-542-064

Working while sick

2011-11-22T06:47:00.001-05:00

After six years of battling cancer through two transplants, countless chemotherapies, surgeries, trial drugs and being saved from losing my insurance completely when Obamacare made insurance caps illegal, I've finally made it to the point where I need to ..... Get a job. Yes, even though I'm currently in treatment, so disabled sitting and working for more than two hours results in exhaustion, and limitations include avoiding people due to a compromised immune system, none of that changes that years of treatment is bankrupting my family. The constant stress of living paycheck to paycheck with weeks frequently in the red has worn on my family almost as much as the constant worry that I'll succumb to my disease. Most people don't go to work when they have a cold, how am I supposed to work with cancer? I'm disgruntled about being forced to work when I should be sick at home, recovering or enjoying the time I have with family and friends, but I'm even more bitter about why I'm too poor to live a comfortable life and battle my disease. Surviving on social security disability without so much as a cost of living increase in the past five years while congress instead voted itself raises, granted themselves frequent vacations and have not suffered any cuts to their retirement or "cadillac" healthcare plans has made me bitter. Allowing members of congress to be fully vested in taxpayer paid retirement plans that include lifelong health care immediately upon entering office, with no possibility of losing these benefits even if they leave disgraced and convicted of perjury, is wrong, especially when it's at the expense of the Americans they serve. I am one of those Americans. Congress, in governing itself, has given itself too much power causing the vast disparity between the rich and poor, and created systems that allow the rich to get richer often by whipping the backs of hard working middle americans who fall on hard times essentially punishing those who choose to contribute by either not making enough to join the elite or by making too much to be given assistance. I'm not the first, patient that has been forced to work during treatment. I've actually been fortunate to have stayed home for so long. Many people take little or no time off to fight their cancer due to common employer practices that include reducing hours so the employer is no longer obligated to pay for health insurance. Yes, the stories about human resources entering the hospital room of an employee patient to announce they no longer have health insurance is true. Talk about a kick when you're down. As if losing your health insurance at the start of a marathon battle with illness isn't bad enough, this action is sometimes done retroactively, leaving a person who thought they had insurance when having surgery or beginning chemotherapy with huge medical bills. And yes, this is all legal. It's practiced under the idea that business is business and is not personal. Of course, it's not personal until it happens to you. I'd love to stay and ramble my frustrations, but I have to go work now.
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PS- I love you: Creating A Digital Farewell File

2011-11-21T19:21:00.000-05:00

When I found out I was terminally ill, the idea of leaving behind a legacy weighed on me, but not as heavily as the idea that I could leave behind a child with little or no memories of me and the values I had dreamed of instilling in him. I’d dreamed of the advice I would give him through out his life. I thought of the times I would sit and rub his back to comfort him and could not be there. The largest legacy on my mind was how I could still influence and love him even if something was to happen.

Luckily, the technology boom that has put a smart phone in just about every teenagers’ pocket has also equipped most families with a camera and video recorder that with some simple teaching is easy enough for the worst neophyte to create collages of memories. Having a phone/camera/video recorder in one makes catching pictures or snippets of conversation anywhere easy, all pieces that can be a priceless part of the multimedia feel you may want your digital memory file to have.

Now, there was no need for me to buy the expensive, cute packaged books that didn’t quite convey what I wanted to say or that had no special sentimental meaning. I could videotape myself reading our special books: Alexander and The Horrible, Terrible, No-Good Very Bad Day, which my son insists was written especially for him, and The Little Train That Could. Those stories were our favorites, and I was happy to have video that was a special part of our relationship, just like most people would want to do leaving their own legacy.

Very simple physically to start, far more difficult emotionally, I created a folder on my desktop marked “Just-in-case.”

Had I had a smart-phone at the time or very little energy, I may have created a free email account and sent everything I wanted to include there, from videos to emails and pictures, making sure to leave the account name and password to a loved one.

Instead, I launched into a multimedia legacy project. I created subfolder’s in the “Just in Case” folder for each individual I wanted to reach out to: my parents, my husband, my siblings, niece’s and nephews, best friends, and obviously, my son.

Email accounts also offer the option of creating folders for specific individuals or purposes, which can be filled as easily as clicking and dragging the message to the appropriate place.

By doing this, every time a picture is loaded onto the computer or something is written I could easily save it in the memory file, and it only took one external drive to back it up. In the future though, loading each individual’s memory file onto a thumb drive will be easy, and then they’ll have copies of our times together forever.

I had imagined typing each letter and putting it together for its recipient with a few important memories in a card nicely labeled with the occasion it was supposed to be opened on, and I didn’t limit myself to birthdays or holidays. I imagined every time I would want to be there that I may not: losing a big game/disappointments, the first crush, or when he simply felt all alone in the world like nobody understood.

I wrote these ideas with a lump in my throat, and still do. Thinking about this is difficult, coming to terms with everything you may miss is devastating.

This is why after creating my files, had they not been virtual, they would have sat collecting dust in the corner. I wasn’t ready emotionally to write them. If you are, that is wonderful. If you’re not, and I worried I wouldn’t be in time, I was lucky to find a friend in Carol Renzelmen, MS Ed.

Any friend, support person, counselor, or volunteer at the hospital could help, but I chose to work with a professional.

Having worked as a freelance writer for most of her adult career, Carol had recently taken classes to volunteer at a local hospice to assist in the combining of her two talents of writing and nurturing into a much needed niche: writing farewell letters.

Carol, who you can find at wordsforalifetime.com, is on a mission to “promote healing and connections through the written word” by helping people leave a legacy of words allowing them to let go knowing that the words that matter most have been said.

She was the push I needed to actually begin my journey, helping me say the things I wanted to say but hadn’t been able to. In fact, she was able to have the clarity and perspective I couldn’t through my flood of emotions that gave me crazed, hysterical writer’s block. Even as a writer myself, putting the words in black and white was too difficult.

Her gentle tactic in assisting in writing our letters included sitting with me, drinking tea and talking about the good times, the great memories that made me laugh from thinking of them, as well as asking the hard questions like, “What’s the most important thing you want to say?”

I wanted X to know that I was always with him, that I loved him, that love transcends all and that I would always be with him. I wanted him to remember his priorities and their order: God, family, school, sports, hobbies. I also wanted him to have letters to comfort him during difficult times that I knew I would miss: the first big game loss, getting dumped, not making the team.

In fact, if I wasn’t a writer myself, I wouldn’t have needed to write anything. Carol could do it all for me.

This is the route I chose to take to remain in my child’s life after I was gone. The file is there. Even some memories and blank cards are mixed in, stored all together in one box, which my letter will direct him and my loved ones too just in case, but every person’s desire, vision, and memories are as different as the lives we have lived. It’s important to find what works for you and make it happen, even if it’s with a box, pens, papers, and envelops written in private with a box of tissues.

Stop the Meanie Shirts

2011-11-21T15:41:00.000-05:00

I know, I know, I know, it's been a while since I've posted. I'm trying to find a balance between my freelance writing, family, and blogging. I started officially writing almost 4 weeks ago now, and I spent the last week planning covert op 55 otherwise known as my father's surprise 55th birthday party.

But just in time for the Christmas season, my friend Chris has created Z and the Cancer Meanie Merchandise!! Now, head to cafe press http://www.cafepress.com/zandthecm/8173246 and you can get your own shirt featuring the cover art or Stop the Meanie: Find a Cure Shirts. There are bumper stickers, magnets, and buttons too.

I love technology. I feel like such a professional!

STOP: Take a moment to breathe

2011-11-20T06:53:00.001-05:00

It's time to stop. Take more than a second. Take a minute. Take 30 or 60 minutes. You know you need it from running your over scheduled, exhaustion inducing rat race life and consider what it is you really want in or out of life. Is what you're doing what you want to do? Do your actions show who you are and who you want to be? The holidays, Christmas time, anytime studies have shown that how we see ourselves often is very different than how we actually are suggesting that the view we have of our true ideal self, who we want to be, is being drowned out by the humdrum of everyday life. Recent research by notorious naturopath Dr. Weil suggests that this also leads to depression. It's no wonder people are feeling disenfranchised all over. The murmur of technology: music blaring, tv in the backgrounds, internet surfing on the side has distracted from what is really us, replacing it instead with a computer generated, photo shopped reality. The Joneses we compare ourselves to are no longer our neighbors; they're the Kardashians, because tv has brought them into our lives but our livingrooms. No wonder technology appears to have lead to an increase in depression, it has drowned out the whisper of our inner voice, taken time away from thinking and learning about who we really are, not just on the inside, but in relation to the world, especially when that world we're relating to is an artificially perfected reality. So what's a person to do? Rejecting technology outright is a little extreme. It's important to learn how to live in harmony with your environment. I suggest remembering what you receive is a reflection of you. If you want a close group of loyal friends be that loyal giving friend you've always wanted. Knowing what you want overtime you will get what you want it just may take a little bit of quiet soul searching.
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Pottery

2011-11-19T10:41:00.001-05:00

Ara Cardew shows Alexander Ford and Eli Smith how to use the potter's wheel at Saturday's West Claremont Center for the Arts Demonstration.

Hosw to Move with Your Doctor/ or Dr. O is on the move!

2011-11-18T11:07:00.001-05:00

Here's to all the hodgers who want to keep track of the leading Doctors Stateside: Dr. Owen O'Connor is moving back to Columbia-Pres. He believes this institute has created a winning balance of research and treatments that will allow him to bring more drugs to market for us as quickly as possible. If you'd like to follow him, simply send him an email. This is the copy of the one I sent.For everybody else, This similar form letter to the right people can help you follow a doctor to any institution, of course, if the insurance companies' okay it first. Hi Dr. O or whoever I may be speaking to, My name is Hillary StPierre, DOB 8/16/82, SS ### and I've been seeing Dr.o every 3 weeks for adcentris treatment. I would like to go with him to columbia-pres. I'm getting my next dose near home @ Dartmouth. However, my last PET showed mixed/questionable results. It's our plan to be treated locally, have my kidney infection heal and get a repeat scan, probably 2 weeks after my Dec. 19 therapy, which would have us needing to meet early in the new year. If this is acceptable, please schedule my next appointment on a Thurs as you see fit. If you're no longer treating patients on this day, again, call and we'll arrange an appt. (***)***-****. Thanks and happy holidays!!! Hillary. It's important when contacting health professionals to understand what they will need to help you. I always introduce myelf like they have no idea who I am, it's safer, and give info so they can look me up in the system. Your name, spell it if it's weird, date of birth, last for digits of your social security #. Those are very helpful. It's like google key works for your health records. At least then, you know theyr familiarizing and you won't get lost. Then If you don't hear from theinstitution by the end of the stated timeline. Call them. Call them whenever you have a question, you're the consumer. Use those benefits, but definately, call if you feel you're getting forgotten. You may be. Hospital communication is improving but slowly. Follow your gut and don't fear being pushy. Fight like your life depends on it.
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Striaght from the hospital

2011-11-17T12:38:00.001-05:00

At least I got some good news. My weight is down to 143! Mb I'll be able to be active and get vack in shape.

Hospital

2011-11-17T12:35:00.001-05:00

2011-11-17T12:31:00.001-05:00

"Doing well," "feeling great," "looking good," these are all what I call "relative statements," Meaning they're all made in relation to the events, past and present, involving the specific person the statements are directed at. For most people "doing well" maybe a cozy, healthy happy financial secure existence. Maybe they got that promotion they've been working towards, bought a new car, or their child aced the spelling bee. For others, say a single drug addicted mother, "doing well" may mean getting clean, maintaining a job, finding a great roach free apartment and getting their kid back from CPS. You see, it's all relative to the person and their experiences. However, many of us still have a tendency to jump to black and white conclusions, such as "Hill's doing well! She's all better. Her treatments put her in remission. Life is good!" I wish this was the case. My "doing well" and "looking great" come in comparison to years of weight fluctuations from 90 lbs. To 155lbs, going into complete respiratory failure, nearly dying due to clotting issues and having my entire immune system inexplicably fail. So yes, I am doing well. I'm doing great. I'm managing to maintain a freelance job. I've been able to get x to and from school and play with him after whether it be yu-gi-oh, video games, basketball or baseball. I've been planning and making dinners. I even decorated for thanksgiving for the first time in years!! I'm so excited, but I don't want to get lured into a false sense of security. My body and my immune system will never be great again. I will suffer setbacks. I don't want people to think these are the end of the world, but the truth is, I'm still in treatment and at risk for serious complications. For example, last night my urine was neon yellow again leading me to wonder if my kidney infection came back despite the cipro I've been taking, but I just went to bed. I woke up nauseas, and feeling tired, but I'm always nauseas. Tired is pretty much status quo too. But 5 min. Before I had to get x to school all my anti-nausea interventions had failed and I began to throw up violently. By violently I mean unrelenting thowing up. Poor x ran to the phone to start dialing up family members. FYI- if you get a call from x and can't speak to me. You need to come check on me. He won't say he's scared. I think the words are too much. We called J at work and he rushed home to get x to school all while x is informing him he needs to stay home with me. I chose to go to the hospital. I'm having a lot of troublle writing now with all the meds ive taken. Sleepy time
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Crazy

2011-11-15T12:31:00.001-05:00

Something crazy happened this morning, not as soon as I woke up, after my medications kicked in of course, but pretty close to it. I looked in the mirror and saw my dimple!! My dimple is coming back. My face is slowly becoming less cushionoid or round, swollen, and fat from the steroids. I used to have 2 dimples, but they've been mia since Dec. 2009. I can't believe it's been 2 years since my lungs started to fail, since bronchiolitis obliterans nearly killed me. I would have died Dec. 2 years ago had x not prayed to God and Santa that I get healthy. It's a miracle. I accepted steroids to survive and help out the miracle. It's a miracle I am still alive today in many ways. I'm a lucky blessed woman. Even crazier, this am I started feeling good. I had a little hop in my step, a swing in my hips, a gleam in my eye. I haven't had in a while. I took the opportunity to do something crazy: go out to do errands! I snagged J's car to get it's oil changed. I went grocery shopping to stock back up on food. This all felt great bc A. The oil change guys think I'm cute enough to flirt with and B. One great woman/friend/supporter sent us some help so I could pay for it. Thanks CW. It was the first time in too long to remember that I wasn't stressed at the grocery store juggling coupons, the flier, and my list trying to spend next to nothing and eat. I was still juggling everything. I just wasn't stressed I knew I had moolah! Exciting to be fed with less stress, but I've warn my cute self out. Its time for a shower.
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2011-11-12T13:04:00.000-05:00

That article that I felt so compelled to write apparently was worthwhile. At least, that's what the people at The Huffington Post seem to think. I don't think this feeling of excitement and validation everytime I get published will ever go away. I hope it doesn't. It's like an unexpected present.
http://www.huffingtonpost.com/hillary-st-pierre/how-to-shop-to-boost-the-middle-class_b_1088444.html

How to Shop to Boost the Middle Class

2011-11-12T07:42:00.000-05:00

I felt absolutely compelled to write this. Maybe, because, I understand the anger among the occupy protests. I also understand what it's like to do absolutely everything to try to get ahead only to have expenses knock my family back to poverty. It is time for the inequality to stop, but that does not mean anyone has to stop shopping.

The 2011 holiday season is fast approaching and as with tradition off-shore factories are kicking into high gear to meet American’s mass consumer needs, but this year’s Occupy Wall St.’s War on Poverty has brought a new form of enlightenment to shopping, and believe it or not, it’s possible to shop for the upcoming holidays like an heiress while boosting the middle class.

In the past shopping local may have conjured up visions of fruits, vegetables and farmer’s markets, and if you’re the type that loves to give fresh baked goods to friends and family for the holidays, by all means wrap up those cookies up and help out a local farmer. However, there are far more options than just fruits and vegetables. Farmer’s markets often have fresh hand made wreaths, jellies, baskets, hand made cards, soaps, everything you need to put together the perfect basket of goodies for your child’s teacher or boss.

If farmer’s markets just aren’t your style and you want to have the full-fledged shopping experience, check out craft fairs this season. Local crafters offer unique, often one-of-a-kind hand made goods for rock bottom prices that reflect the economic times. My last big find was a gorgeous 11x14 photo, matted and framed, for $35. You won’t be able to find that at the mall. If you’re new to the craft fair scene and don’t know where to go, you’re not lost, visit either festivalnet.com/craft_shows.html or www.fairsandfestivals.net/ to search events near you.

If you’re looking at these options and thinking, “Not possible. I work, have kids, and just can’t shop beyond my computer.” Have no fear, boosting the middle class is just as easy on-line.

Etsy.com is an on-line, shopping mecca filled with options handmade from U.S. artists. Even better, by shopping directly you’ve cut out the middle man and can find quality goods for rock-bottom prices. This is the absolute best place to find customized jewelry ranging from stamped name pendants to upcycled earrings and pendants made from bottle caps with any image your heart desires, all for quality prices. Want to give and get? At etsy, you can find shops supporting good causes such as hgracejewelry.etsy.com that has all proceeds go to assisting cancer patients with their medical costs.

You can even find your holiday cards there too instead of running to a big department store, paying a sitting fee for pictures, and printing them out yourself. The options to help locally with holiday cards are endless. Why not try the local photography business for your Christmas pictures? Every town has one, and often they infuse far more character into photos than the bland surroundings of shoppers, cash registers and fluorescent lights. You can even find small businesses via the net to have customized cards created such as http://www.storkie.com/.

Christmas cards are also a great opportunity to give back. If you’re not interested in customizing, most non-profit foundations sell Christmas cards as a fundraiser. The Sam Fund, which helps young adult cancer survivors to “live again” is selling sets of 21 for $25 with free shipping at http://www.thesamfund.org/holiday/cards.html

For the avid reader, createspace.com allows authors, musicians, and film-makers everywhere to publish their works independently, getting their master pieces to you for middle man free prices. Shopping is as simple as going to createspace.com, selecting member spotlight on the toolbar, and clicking review new work. You can even find new, quirky Christmas tales such as A Ghetto WaterFront Christmas Or Herbie’s Mysterious Christmas Adventure.

If you’re still lacking ideas the go-to gift certificate does not have to be from a big business. You can give a gym membership, certificate to the spa or salon, a gift certificate to the local restaurant you’ve been wanting to try, money to get your husband’s car detailed, a membership or rounds at the golf course, hire a housekeeper for a day or even pay for snow plowing for the season.

Shopping to boost your local economy or middle America does not have to be more expensive, stressful or time consuming than braving traffic to a crowded store and elbowing other desperate shoppers for the must have toy on sale. It’s actually much easier, friendly, and you’ll leave feeling good, not just because you missed out on the elbowing, but from knowing you’ve made a difference.

2011-11-11T18:03:00.001-05:00

The day after therapy is rough. Dad and I did manage to get kamikaze style care in NYC. We left at 6am for my 11 appt and pulled up perfectly at 10:45 after some discussion about whether the address I had and the garmen were actually more correct than what my dad decided in his brain. Vic's job was to question all my tips yesterday. He didn't even take up the $20 valet service at first, opting instead to find his own spot, which he did, but the never paid the meter. I miss the days when I was a savvy new yorker and he was a nervous country bumpkin. Then he listened to me. I also think he ignored me when both yanellie and I said if you hit commuter traffic, go to her house to wait it out. If you leave at 5pm from nyc or 7:30pm you'll get home the same time due to gridlock! I say I think because I was passed out from lots of ativan and benadryl. All that aside, I love my dad for the great care. Our trip basically cost $100 + food and tips. That's the lowest we could possibly get it with gas a minimum of $80, parking $20. We couldve packed snacks to save on food, but due to an unfortunate incident where a high strung nurse called my name 3 times in quick succession causing me to hop out of my chair, run across the office screaming "I'm here. I'm here!" Then catching the door as she shut it to get inside, I almost passed out. I caught up up to nursey then, I felt it coming screamed, "I need to sit down!" Ugh, waking up the next morning is rough. Some people forget that I go to nyc for treatment, not for shopping, and I feel like shit the next day. Every appendage feels weighted down. I can feel the oxygen shunting to my head and torso. My head is hazey from being drugged to the hilt and I can't run from shop to shop carrying extra weight. It will make me irritable and pissy. Most people understand this, especially "caretakers," but you may be surprised to know some people don't. Thanks to lots of medication, I've been able to play today! Don't want to leave on a grouchy note but that's just how it goes today.
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A Dad-date

2011-11-10T06:41:00.001-05:00

Hi Too All

The new drug is working!!! See Hillary's note to me about her PET scan of last week.

More good news!! My PET scan came back remarkably better. The tumors in my chest are gone. There are some iffy areas near my kidney, but infections give false positives and I went in complaining about a possible kidney infection. So I'll probably be cleared up with Cipro, an antibiotic. I can stay on my treatment a year to keep me in remission! Yay. Good news.Hillary

We are headed back to NYU today for another treatment. We will go every 3 weeks for the next year. We are trying to go down and back in the same day this time if Hillary is up to it. If not we have lots of friends and Relatives along the I-95 & I 91 corridor that will be getting a call for an overnight visit. This treatment is not anywhere near as toxic as chemo. Hillary is able to function much better and can be more active. Her quality of life is much better than it has been. She still gets tired easily and can't walk for very long but her mind is much sharper. No Chemo Brain. It is believed that the cancer will come right back if she goes off the drug.

Hillary is still active. Xander's soccer season has finished. She was able to go to every game! Now it's basketball season and can do it some more. She is making jewelry. She has her first actual Job since she started treatment 5.5 years ago. She is writing special articles for a local weekly newspaper. She told me they only want 3-400 words so it only takes me an hour!! She is also writing for the Huffington post but doesn't get paid. Her mentor at the post is writing the new TV series "suburbatory".

I don't know what she will do next. She always surprises me! I hope she continues to Change all of our lives for the better. Keep those thoughts and prayers coming they are being answered.

Love too all
Vic, Nancy, Heather Allen, Pierce and Preston, Grace and Patric, Jon Xander and Especially Hillary

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2011-11-09T21:49:00.001-05:00

It's amazing how easily things are coming to me now. I can stay awake most days. I can pick up the house, do dishes, fold laundry, and make dinners some nights, but not all three in one day. I can dance and sing with X. I can make him and friends buffets of food. I can wake him up by jumping on the bed and screaming on the top of my lungs, something that would have left me in a cold sweat gasping for breath just last year. X remembers the days before the singing and dancing stopped, when I would wake him up in the morning by signing "xander, bander fo fander fe fi mo mander- Xander" and stealing his covers. I'm so happy to have these moments. I'm so happy he has memories of me! For so long I lived in fear that I'd leave my child motherless, without any memory of who I was. I'm still suspicious about how long this will keep up and if I'll continue to get better or if something will happen to set me back again. Getting better is almost scarier than the constant disease. Disappointment is worse than the status quo. Sometimes I lose my breath and think, "what if my lungs keep deteriorating?" The highest rate of death from lung disease is not from lung cancer or COPD in people my age. It's from lung fibrosis or scaring and I'm a poster child with the radiation I received and surgeries. I am really confused as to how to react to my PET scan news. My body feels better, but I'm highly suspicious of the cancer. It's a nasty cancer that comes back time after time. I haven't had three clear PET scans in a row in the past six years. I think it was 2007 when I had two in a row. I'm choosing to celebrate, of course, even if it's only for 3 months. This time last year I had a promising PET scan for the holidays too. I know I'm resigned to live life with a very real fear many don't understand, like a modern day Eve who bit the apple and now knows far too much about suffering. I'm not afraid my cancer will come back and kill me quickly. I fear more suffering. I'm scared of days I'm so tired even my teeth and skin hurt and there is no relief from morphine, benzos, bubble baths or any other place, when I just pray for relief from sleep. It's hard to believe, after almost six years, being told I'll never recover, that maybe I can get a life back. A life, not my life, not the one I thought I'd have but whoever gets that? I'll have an even better one, living fearlessly knowing that prayers and love have kept me here. I'm off to treatment kamikazi style tomorrow, leaving for the city at 6am, starting treatment at 11, hopefully out by 3 and home that night.
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PET Results!

2011-11-08T09:52:00.001-05:00

I hope you all have been waiting by your computers with baited breath for my most recent test results. I've been feeling good. I've had more energy. I've had some minor issues that could have been symptoms: extreme fatigue, indigestion, lung and kidney pain, etc. But it turns out........... My cancer has almost disappeared! All the tumors in my chest are now gone! There were some "iffy" areas according to the radiologist, namely a strong of nodes in my iliac crest that were new or larger. Good thing my hematologist is also a radiologist, because A man with intelligence is just so sexy. Just kidding, it's good because he can tell the difference between cancer, inflammation, brown fat and a virus, all which cause false positives. I'd come in that morning complaining of a possible UTI. I was peeing cloudy bright neon yellow urine, which is always a little bloody too. I had to go all the time and it hurt! Turns out those "iffy" nodes could just be an immune reaction, something cipro could take care of. Yay, so possibly no cancer there. It was a busy day and I'd changed appt. So Dr. G and I didn't get to do our ceremonial over view of the scan where I bed for a picture to show how well, or not, that I'm doing. Maybe next time. Thurs. It's back to NYU for treatment.
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Playing with pain

2011-11-07T10:40:00.001-05:00

I decided to play with my pain meds last week. Palliative care actually started it. Like most things, I just decided to take it up a notch. I wasn't feeling nauseas or anxious so for the first time in 5 years I decided to ditch my ativan. I'm sick of burning holes in my brain. I thought I was weaning myself appropriately when on Fri, after a morning of fun with x, the exhaustion and crankiness hit me. I wanted to stay up and be fun so I took a newly prescribed stronger painpill then two cesamet or chemical marijauna pills. Those usually keep me up and moving. Not this time. Instead it knocked me flat on my ass giving me the spins and everything. I could not put a coherent thought together, and x got worried. He started asking me who he could call to hang out with them while I slept, but now I think he was scared for my well being and didn't know how to say it. He did call the only relative around, twice, asking for her to come over and get him, which I think could translate into, "I'm scared. Come check on mom. Tell me it's ok and get me out of there," but she didn't get it. I was confident I was fine, but knew I was a little too heavily medicated. That whole situation breaks my heart. I'm trying to get rid of brain burning benzos and instead almost OD with my son. Then, when x finds help, he can't get the help. I remember how I felt when I first started calling for help. I was sick, but moreso I was sad and devastated. To speak the words I had to overcome the lump in my throat threatening to cry any minute. I did not want to say the words to ask because the words made it real. The words were my admission that my life was beyond my control. I can't imagine how x feels when he's scared and desperately wants to ask for help. He's only 8, but I've been so impressed with (most) his values and ideals that are showing through when he socializes. I get the attitude, but with these past months going well, x has finally started to overcome some obstacles of his own. His reading is improving. He likes school somedays. He has a best friend. I'm so happy I get to see this. I'm alarmed that I've been on chemo almost straight through from April 2006 until now- 2011. That really hit me. We'll see how successful the ativan weaning is. I've kicked my pm habit and my am habit was mostly gone, until I got severely nauseas today. But that's another story. I don't want to need it daily. I have my PET scan today, cross your fingers, toes, and legs. Its an important day.
Sent from my Verizon Wireless BlackBerry

2011-11-04T18:55:00.001-04:00

I was at it again. Huffing and puffing and trying to help people out. My latest posting on the huffington Post is: http://www.huffingtonpost.com/hillary-st-pierre/medical-bankruptcy_b_1070452.html. If you're an avid Baldie lover, and I hope many of you are, you've probably seen this before under a different title with a little extras. Ten things I wish I knew when I became sick or ten insider tips to avoiding a medical finacial crisis. I don't know. Trying to remember is hurting my brain. X has been home for the last two days, which I was excited about, because I like to give some extra mothering when I can. I was excited but nervous about this whole fatigue thing. On top of falling asleep from exhaustion, Palliative care put me on a new, more effective, pain regimen monday. They called Tues after I bought, started the new regimen, felt the best I'd felt in forever, then called and said, "no, just kidding, you can't have that. Your skin allergies are to severe even if you felt fabulous. Go back to what you were taking that we decided yesterday did NOT work for you. Oops, and even though you all ready spent your $40 in co-pays you have allowed for pain in a month, go spend another $60 to buy the other stuff that doesn't work. What's another $100 bucks?". It's so frustrating I want to go smash the bottles or throw them as far as I can into the great beyond, but I know if I did that then I'd wake up to addicts sniffing my driveway and all sorts of people with flashlights in the woods. All sorts of happy content people searching through the woods, hopefully. Well either way mom child time went well yesterday and until 1:30 today, when my body revolted. It started with me eating a piece of pizza I KNOW hurts me at 12:15. At 1 I'm getting stomach pains and sweats so x and I rush home. I decide to take the combination of meds I know will heal me pain and usually wakes me up. Usually. Meaning, not for me, no not this time. I fell asleep, which I think made X anxious and upset when the nap went on. He wanted to call everybody to take him/be with him, but nana wasn't in town, Jon, Pat, Dad, and grampa were working and meme had an appt. I know he was worried, maybe, I took to much meds, which I essentially may have. It was not more than prescribed, but maybe more than my little man's psyche to handle. I hate worrying him, and worse, I'm wondering if how I feel isn't a side effect? What if it's a symptom? Severe chronic fatigue could be from treatment or cancer, but generally with the B side effects of lymphoma I can't control where I sleep and don't sleep well at night. It feels like cancer fatigue. I'm getting acid reflux and hiccups again. Ok, it sounds silly, but trust me, this happens. I think it's how a tumor is pushing on my lower esophogial sphincter (the valve between the throat and the stomach) causing it to spasm when I eat or drink. Then I have increased pain, especially in my lungs and hips where I've either had active disease or a lot of fibrosis (scarring). If you thought what you could see outside was bad.... But I have hope and a strong faith that whatever will be will be and that will be the best for all beings. Hmmm, it's a hilliteration (hill's alliteration). Couldn't hold back the geeky writer joke. But then there's the good events, more energy, etc. I'll know results Monday Nov. 7th Everyone, please pray, using whatever words or images in your mind that you like.
Sent from my Verizon Wireless BlackBerry

Over Medicating or Narcolepsy? Why I'll fall Asleep Anywhere.

2011-11-03T06:39:00.000-04:00

Brother-in-law, Allen, with his two biggest educational
supporters, my sister, Heather, and his Prof. & Mentor.

I don't know what's wrong with me, for all the good that is happening, I've been requiring a lot of sleep, and my body doesn't seem to care when and where it gets it.
If sleepy time was confined to my bed I'd call this the normal fatigue side-effect that I get with every therapy, but it's not.
Like I said yesterday, I'm forming a routine like I haven't had in years. I'm waking up able to take care f myself and X in the morning! How amazing is that?
I'm also able to do afternoon and dinner routines, which is absolutely fabulous.
But did I mention in the middle of the day when I'm, say, meeting with my NP, in family family, or watching my brother-in-law present his Master's thesis (Go, Allen, Congratulations!), I doze off.
Dozing off while watching Allen present his thesis reminded me a little bit of high school, but unlike high school, yesterday I was doing everything I could to stay awake!

Allen, presenting his Master's Thesis on Lean Management
of Medical Device Products, one of his final tasks before
graduating from Mass. College of Pharmacy.

I started searching my purse for mints, gum, anything that would stimulate me somehow, then as I was in the purse, I started to nod off, my eyes closed, me head went down slowly, I snapped my felt back up and through a mint in my mouth.
But then again, almost immediately after, mint in mouth, the same thing happens again, but this time I'm distracting from Allen worrying people about choking!
Hopefully I won't look like a dying narcoleptic today when I have my "official" interview with the VT Journal publisher as a freelance writer. Cross those fingers.
This problem started being an issue last week during our families very first therapy appointment.
Yes, we are now all in this together to be sure we stay sane.

And this little monster stayed home, but
I couldn't let Halloween pass without
showing a picture of my Spanish wrestler.
(where does he come up with these ideas?)

I do think the therapist got the picture of how sick I am, since I kept dozing off with J and X acting like it was completely normal for me to pass out mid conversation.
The therapist has invited just J and I back to discuss things we may not want to in front of X. I thought she meant relationship issues, fighting, now I'm pretty sure she means the prognosis of my disease.
I've only seen people with end stage disease fall asleep all over the place like I do.
I'll do it when I'm eating, walking up to my food fallen around me. I'll do it when drinking, being awoken only by the cold splash of whatever I hoped to get in my stomach.
I spoke with palliative care about this and we switched my pain medications to something more easily detoxified through the body, especially medications that took altered kidney function into account.
My kidneys are running fine now, but it's predicted it may not stay that way. I'm thankful for the painful but life saving metal stent that's gotten me here. I'll give that cross up to God. It, honestly, feels like such a small problem alongside others.
Of course with me being me, with my luck, the next day palliative care called, and I was told I couldn't use the new med due to my skin allergies.
I'll go back in two weeks. Hopefully this will pass by then.

I'm Making it

2011-11-02T06:38:00.000-04:00

I flipped to my blog to write this morning and suddenly, for some unknown reason, my playlist skipped to "I made it."
I'll take that as a sign, thank you.
If I would survive until 30 years old or not has always been suspect in my mind. I was a frail little girl. I was always getting respiratory infections and the latest virus, like mono. Hitting 29 last August was like getting hit with a ton of bricks.
Now. . . I'm not so sure.
For the year I thought would kill me, filled with stumbling blocks like renal failure and another rapid re-occurence where high-test chemo was again recommended, the outlook so far is good.
Not only good, I barely dare to say it, but excellent.
Yesterday, I hung out with a friend in the morning, took my obligatory naps (yes, those are still needed), wrote talked on the phone, picked up the house cleaned the dishes, played with X when he got home, cooked a family dinner and was still able to stay awake and talking until past 8pm!
This is huge.
I feel like, dare I say it again, I'm normalizing!!
I'm able to shower in the morning, every morning if I want to without having the chore of washing and dressing exhaust me to the point of falling back asleep. During my first transplant, I made it a goal to shower and change my clothes everyday to feel fresh and "human."Recently, I'd go so many days without showering I'd lose count. I wasn't even able to fake that I felt good.
My "healthy make-up" had become a thing of the past. Now, I'm making lipstick and cover-up part of my am routine again, like taking my medication, brushing my teeth, and trying to write.
That's, of course, if X allows it. He has his own am routine I have to cater to.
Finally, after years of struggling to make it through side businesses, art, jewelry, books, donations, and down right begging, I finally feel well enough to try free lance writing.
I realized how much time and energy I was placing in trying to get these other ideas to work when none were paying off significantly. Some of them had also stopped making me happy.
I don't want to do things for money that do not make me happy at this point in my life.
I'm excited to try working with The VT Journal. I'll be doing two stories a week: one news and one feature of an interesting person in Claremont.
I'm just excited to be joining the world again.
That doesn't mean I'll be stopping with my jewelry, which you can find on www.hgracejewelry.etsy.com, writing for the Huffington Post, creating Z books, or "cleaning out my closet" on facebook, but at least I won't stress over whether I can buy apples and coconut water.
I feel like I've been hiding, isolated, for years now from being forced by my body to lie on my couch ill and in fear of getting sicker.
At least now, I'm feeling okay. I have a little more energy, and I'm hoping to hit the big 3-0 in August.
This year, I don't want pages of facebook "Happy Birthdays" I want to see faces, here, for one huge celebration of life.
Don't live here, no problem, we have plenty of space to spare inside and out. Bring some camping gear.
Barely know me? Again, not a problem, if we've even crossed paths your invited to come over.
Never met me in your life? Still, absolutely not a problem, if you've been reading me, praying for me, feel you know me, I want you here. You've all been a part of my survival. I never would have survived this long with out your prayers and support.
But of course, after years of disappointments and near death experiences, I'm tentatively calling this a success. It's a temporary success. Thanks in large part to God who has listened to the prayers and guided my way.
I'll now the actually effectiveness of this treatment on Mon. Nov. 7th when I get my first PET scan since starting the medication. I missed all-saints day yesterday, but Let's pray for good news.

Surviving with Chronic Cancer will kill you financially

2011-11-01T12:30:00.000-04:00

After almost 5.5 years of anxiety and stress regarding my disease and our financial situation I have finally made a both saddening and exciting decision...... I'm getting a job. Yes, folks, I have been hired for a real bonafide job with a paycheck as a freelance writer for The VT Journal. I've spent too much time crying and stressing if I should have or could afford spending that $5 on a sweater from the thrift store. I was crying and praying to God, again, about the desperation I felt regarding my inability to provide for my family when the newspaper flipped open to an eye-popping classified ad looking for a writer in the Claremont area. I sent off a quick email, was sent on an article "interview" and viola, Hallowesta Celebrates its Thirteenth Anniversary is hitting the front page with pics. With receiving SSDI, I'm allowed to make up to $1200 monthly; however, I've never been healthy enough to commit to anything. I can't work out of the house. I can't exert much energy. I'll never make $1200 monthly, but I also once told myself I'd never be able to work anymore, anywhere, ever again. I guess you never know what may happen. Luckily, I love writing, and I'm finally healthy enough to feel I can commit to a job, or commit to anything that will re occur in the future. I can probably submit two stories a week. The price I'm getting isn't what I'd hoped for, but it's something. It's stability. We so desperately need stability. Winter is coming soon. We need a $300 storm door so we no longer can view the outside from our hallway. We need thermal shades to regulate heat with no strings, because I have managed to break all the cheap ones before. We can't get those things to eat and stay warm while I pay $250+ every three weeks going to New York. So the goodnews is I'm healthy enough to try working at something I love. The sad part is that living with cancer may be survivable, but we can't survive financially fighting cancer. No one can.
Sent from my Verizon Wireless BlackBerry

Zombie Time

2011-10-31T06:33:00.000-04:00

Zombie Time by hillary17 | Make your own at www.toondoo.com

Warren Buffet's Idea to End US Deficits

2011-10-30T17:20:00.000-04:00

Warren Buffett, in a recent interview with CNBC, offers one of the best quotes about the debt ceiling:

"I could end the deficit in 5 minutes," he told CNBC. "You just pass a law that says that anytime there is a deficit of more than 3% of GDP, all sitting members of Congress are ineligible for re-election. The 26th amendment (granting the right to vote for 18 year-olds) took only 3 months & 8 days to be ratified! Why? Simple! The people demanded it. That was in 1971...before computers, e-mail, cell phones, etc. Of the 27 amendments to the Constitution, seven (7) took 1 year or less to become the law of the land...all because of public pressure.

Warren Buffet is asking each addressee to forward this email to a minimum of twenty people on their address list; in turn ask each of those to do likewise. In three days, most people in The United States of America will have the message. This is one idea that really should be passed around. *Congressional Reform Act of 2011*

1. No Tenure / No Pension. A Congressman collects a salary while in office and receives no pay when they are out of office.
2. Congress (past, present & future) participates in Social Security. All funds in the Congressional retirement fund move to
the Social Security system immediately. All future funds flow into the Social Security system, and Congress participates
with the American people. It may not be used for any other purpose.
3. Congress can purchase their own retirement plan, just as all Americans do.
4. Congress will no longer vote themselves a pay raise. Congressional pay will rise by the lower of CPI or 3%.
5. Congress loses their current health care system and participates in the same health care system as the American people.
6. Congress must equally abide by all laws they impose on the American people.
7. All contracts with past and present Congressmen are void effective 1/1/12.

The American people did not make this contract with Congressmen. Congressmen made all these contracts for themselves. Serving in Congress is an honor, not a career. The Founding Fathers envisioned citizen legislators, so ours should serve their term(s), then go home and back to work.

If each person contacts a minimum of twenty people then it will only take three days for most people (in the U.S.) to receive the message. Maybe it is time.

THIS IS HOW YOU FIX CONGRESS!!!!! If you agree with the above, pass it on.

2012 Health Insurance

2011-10-30T09:43:00.001-04:00

This years health insurance cost is taking $86.12 out of j's paycheck each week. We pay $86.12 a week for a family of three just to say we have health insurance, and we're lucky. We have insurance, and thanks to healthcare reform, it won't stop because I've reached some predetermined number by businessmen. It would be nice if this was our sole cost, but that's where the nickel and diming begins. We have a $500 deductible, which makes us ineligible for any pre-tax health savings plan, which are available for high-deductible plans. Then we have co-insurance, where the company pays 80 and we pay 20 of costs, up to $4000, which we hit early. For most families. This would be great for the average family, and often, having this co-insurance guarantees insurance companies never pay the full cost of treatment even though you pay 86.12 weekly. But we're not the average family, we are a sick one. The $4000 co-insurance bills will be flooding our mailbox by Feb. To be one of the "fortunate" Americans with health care, we will pay $86.12x 52 weeks or $4478.26+ $500 deductable + $4000 co-insurance equaling the MINIMUM amount we'll pay for health coverage: $8978.25. Of course, this doesn't include visit co-pays: $25 a specialist and $15 for primary care. It doesn't include co-pays for medications. Adding these two categories alone our health costs have reached $10000 for 2012. If only we were healthy, that $10000 could go towards one great vacation, but we are, so what does the insurance company do with all that money?
Sent from my Verizon Wireless BlackBerry

2011-10-28T06:10:00.001-04:00

I did it again! I huffed, I puffed, and got published in the Huffington Post. A piece I wrote about coping with the loss of beauty and aging by not placing such a significant value on women's superficial attributes made the cut. It was featured in yesterdays "womens" section. See it at http://www.huffingtonpost.com/hillary-st-pierre/women-aging_b_1031358.html. While you're there I'd love to start accumulating some fans. Please hit the red heart button to get my writing and so we can chat openly via the post regarding my ideas. If you don't like me THAT much yet but like the piece, please at the very least, send it around, blow up the blogosphere, share it on facebook. You know what to do!
Sent from my Verizon Wireless BlackBerry

WELCOME TO BALDIE'S BLOG

Hillary's Obituary

Celebrating Hillary's Life

Update from Vic & family

Hill's Update

Hillary Update from Vic

Uptown Girl

Beginning skin breakdown

Warning: Graphic

The whole picture

Candi

Smiling Still at 8:30!

The George Washington Bridge as a patient!

View from colum-pres. Hospital room

Lower extremity swelling

The truth

Bitter or better

Whoa, cankle

Contagious Joy: Spread the wealth

Treatmennt/ Physical Update

Choosing Happy: An Emotional return

We're all in this together

Contagious Happiness: Life's little moments

Dress shopping with Steph

X quotables

X quotables

X quotables

Getting healthy again

Dad-date

Step by step

DHMC Receives ACO Award (finish, needs picture)

The good news is....

The good news is....

Falling

Falling

A Day for Novenas

GVHD OF The Bowel

Update

Revlomid: here I come

2012: Kidney Infxs and Extra Mom TLC

Still sick: Happy 2012

Coming back

GVHD Got me

Happy Holidays

Best Xmas Present

I'm a CAUSE! Check it out.

I'M A CAUSE!!!!

Thank you, thank you, thank you.My friend started a fundraiser ongoing through January 31st.It's a Thermal Tote Sale!!

They make amazing gifts: stock up for birthdays and next

Christmas and to top it off, 100% of the commissions will go

towards me and traveling to NYC ALOT!!

Goal of $1,000 dollars in sales and 100 totes!!!

Go to http://www.mythirtyone.com/darciegauthier click on "Place an Order" and then "Shop Now" going on from 12/22/2010 to 1/31/2012.

Thank You all for your help ♥ Merry early Christmas, they love me enough to keep me alive!

Dr oc notes

Happy with my haircut

Dad-date

Scrooge Boerner speaker of the house

Hospital day 2

Hanging in

Taking a PET Scan Peek

Sickies in the house

The Gratitude Attitude

Going, Going.....

Being sick stinks

Ouch

My first ponytail in 6 years!

Hosp budget/ therapy pilot

X's Christmas Wish Miracle

Normal treatment weekend day

Good am

I've been missing everybody and I'm back.

Comics Teach Science; How Technology can teach

Cyber Monday Sale: Customized Etsy Goods

Plan X: I've gotten a job

Vtech Vsmile IMG00184-20111123-1240.jpg

Fisherprice smart cycle Like new IMG00183-20111123-1235.jpg

Working while sick

PS- I love you: Creating A Digital Farewell File

Stop the Meanie Shirts

Thank you, thank you, thank you.
My friend started a fundraiser ongoing through January 31st.

It's a Thermal Tote Sale!!

Go to http://www.mythirtyone.com/darciegauthier
click on "Place an Order" and then "Shop Now" going on from 12/22/2010 to 1/31/2012.