Baldies' Blog began originally in the UK by a 26 year old journalist with a blood cancer on a mission to inform the world about bone marrow donation.

He has since died, and I took on the cause of making cancer care more transparent for everybody.

Cancer is a disease that will touch everybody through diagnosis or affiliation: 1 in 2 men will be diagnosed and 1 in 3 woman will hear those words, "You Have Cancer."

I invite you to read how I feel along my journey and
how I am continuing to live a full life alongside my Hodgkin's lymphoma, with me controlling my cancer, not my cancer controlling me.

I hope that "Baldies' Blog" will prepare you to handle whatever life sends you, but especially if it's the message, "You Have Cancer."

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Sunday, November 30, 2008

Bad Day video

I suck at Life

I thought, again, I should show what I specifically hide from everybody.
It’s one of those days.
If you think you’ve had a bad day, I’ll go head to head with you and prove mine is worse.
Let’s play a game and see whose life sucks the most.
Again, I’ll win. I suck at life.
I don’t even want to hang out with myself.
Maybe you think you know about this, but unless you’ve been sick like me, you have no idea.
I am at home. I was discharged last Saturday. I don’t know if I was clear on that.
I’m going for a CT of my sinuses tomorrow since nobody can seem to find a cause for my nasty cough.
My lungs are CLEAR. My labs are FABULOUS.
But the cough is nasty and I’m done with it!
I want it gone PRONTO. Fixing it yesterday would have been good.
I sound like my grandfather did when he was dying of lung cancer.
At least what I spit up is just yellowish/tannish/green. It is not pints of blood like pepere.
His example was enough to make me a lifelong NON-SMOKER.
I’m still carcinogenic. I’m toxic.
I’m not talking figuratively. I really am.
I have been told I have an “addictive personality,” and that’s NOT psyche speak.
Anyway, I’ve reached THAT point in recovery.
The point which I want out of my house. I’d actually really like out of my life.
These are my complaints: I’m in pain. I ache. I can’t stop coughing. My head hurts. I don’t have energy. I woke up at 7am and crawled back into bed at 9am. That is where I’m staying.
I don’t like to complain. Did what I just said help anybody?
I don’t think so.
I also feel like a boy. I’ve got my hoodie and my baggy pants on. My comfort clothes. When I wore these in High school I thought I was posting a clear sign: Don’t look, don’t touch, my body is mine.
Jon informed me that this idea backfired. Guys only look harder and use their imagination.
Their imagination?! This is horrible news. Honesty is not always the best policy Jon.
Now, I feel like a boy with my short hair and baggy clothes. Can anyone still really tell I’m female?
To make things worse, I’m all hormonally wrong. I’m a twenty-six year old menopausal woman. This started at 24 years old.
I’ve lost my femininity. Thank goodness I know who I am or I could have one big identity crisis.
Jamie Lee Curtis is genetically male. She was born as a hermaphrodite, and her chosen sex was female. Her genes say she is male.
I don’t know what I think about this, except she is decent looking.
I’m done having my crisis. I’m going to take a shower. Drink some Tussionex. Watch some Gray’s Anatomy and sleep. Just like a cancer vixen should.

Pre CT


Let's hear it for Rock Bottom!

Rock bottom hit in August 2008 or somewhere in there.
It was a period of time actually. Rock bottom is not one day. It’s a phase.
You want crazy? I had your crazy.
My husband and I had to give our son to my parents to care for while we were sick. We had to give up our son. That should have been enough. It wasn’t.
I couldn’t see my nieces and nephews, but I was hearing stories.
My man, Jon, was in the hospital and I couldn’t support and take care of him. I hear the nurses gave him “special treatment” though. Even when he is sick, he’s fine.
He, also, could not support me.
Jon had to continue to work despite his pain since a loss of insurance would have been catastrophic.
I lost my nursing license due to my lack of ability to work.
We were broke, with no bail out in sight.
I had forgotten a better portion of the summer. I spent at least 6 weeks in a blurry, drug and chemotherapy induced haze.
I met my doctor twice and didn’t remember. Still, to this day, I’ll have people run up in excitement to see me. I met them in July. I don’t remember, but I pretend I do.
I don’t think all of my providers believed in my amnesia, but I know I have no memories where I should. I know me.
I had, again, spent 8 weeks using every ounce of energy and waking moment trying to shower, walk, eat, and go back to sleep while trying to keep my food in.
Then I couldn’t keep my food in. I dropped weight. I had what is termed a “Class 3” reaction, meaning severe.
I’d throw up in the car, the street, the walkway, the department store, and any other store I dared to set foot in.
If I lost my ability to move and do the things I love, I’d lost everything. I hope that will never happen.
I stopped my antidepressant due to a side effect of acid reflux so severe I’d end up in the bathroom forcing myself to throw up to alleviate the pain and the pressure.
I kept running my first transplant through my mind, thinking, I’m screwed. What happened last time will happen again. My body hates me. My disease wants me dead.
I felt like Job. I was started to wonder where my breaking point was.
Let’s hear it for rock bottom!
I did get a bail out in the form of TWO benefits for me to pay for my medical expenses. We received enough to pay for Jon’s too.
The people rallied on behalf of me!
I started writing in September after I decided I had nothing left to lose. I also thought I had nothing more to give.
I did not want to be judged and have people think I was misusing their funds. I wanted everybody to know how this happens to a young family and a strong, savvy, smart business woman with her entire future in front of her.
I got mad. Even back with Shakespeare remember, “Hell hath no fury like a woman scorned.”
I didn’t want to go out like that, weak and scared. I wouldn’t let my last emotion be sadness.
I’d taken my beating. I needed to beat back. I started and I haven’t stopped.
I dragged myself out of my depression by my fingernails, with a whole lot of help from everybody. I had to give back and pay it forward. If I can lose everything and find it again, I can help others do it to, and I could share what I had left, me.
It’s all me, baby.
So let’s hear it for rock bottom, with out it, I wouldn’t be writing to you today.

Prescribe Porn

I think it is amusing and hysterical some of the pointers I get from other patients.
I heard a new method in pain management today.
This one may be my favorite so far.
I was told to get porn.
Apparently, pleasure increases endorphins.
It could be sedating and stimulating.
I really wanted to ask them what exactly they would recommend.
Maybe, Naughty Nurses? I’m all about outfits.
Why is there no “Hottie Naughty Doctors?”
Was this what my sister meant when she told me I should drink “Tahitian noni juice?”
I did think that sounded a little dirty.
I don’t think this is going to be my new preferred pain management method.
I will file it away under my “things to do if all else fails” list.
I’m pretty confidant I’d be able to find someone to help me with this.
So here’s another tidbit from the minds of the desperate.
Thanks. I love the suggestions. Keep them coming.

Saturday, November 29, 2008

Sharing or Scaring?

I have a tendency to sugar coat my problems.
I really don’t want anybody freaking out.
Also, I really wanted to be home for Thanksgiving to hang out with the family.
This time last year, I was just old I was in remission.
I thought I was cancer-free for good.
Happy holidays to me!
I was able to enjoy every second.
I could shop and wrap the presents.
I relished every moment. I never complained about the crowds, the stress, the cleaning, or wrapping.
I never complained because I knew I could have NOT had that Christmas.
Everything changes when you know you’ve walked a fine line between life and death and lived through it. I’m not talking about a little accident. I’m talking about struggling and fighting for years and having a severe fear that your time is up. I’m talking staring mortality in the face and understanding just how fragile life is.
Congratulations to me, I was a survivor last holiday season.
I’m still a survivor. I’ve survived my past. Go me.
The holiday season before was TERRIBLE. I don’t think it get worse. I was holding by my nails to hope. I’d take chemotherapies, take a break to get well enough for a transplant, then the cancer would come back when we weren’t looking.
I live in fear my cancer will sneak back in while my providers are looking in the wrong direction.
Let’s name my cancer. It’s time this nasty illness got an appropriate name. Lymphoma just does not sound mean enough.
Let’s call it Lucifer, because I know good always overcomes evil. I have the devil in me, trying to succeed in taking me down. He won’t. End of discussion.
I think this name is appropriate for the holidays.
This past week I’ve been struggling with a hacking, productive cough. It’s the type of cough that makes everybody in the room stop and stare and ends with me running for privacy to spit out whatever comes up.
EEewwww. It is nasty. It’s nasty to watch, but put yourself in my position. It’s even worse to have. I’d be willing to bet most 26 year olds haven’t dealt with this.
Lucky me, I have, and I’ve dealt with far worse.
I thought this was so inconsequential I’d stay home and deal with it. Then it started to hurt and effect my eating and drinking. Maybe it was time to get it checked.
Melissa and Beth got voted to work the Friday after Thanksgiving. Sucks for them, but good for me. I had NPs that knew me!
I wish I was in their position, and got paid to go to the hospital as much as I do, especially around holidays.
Beth does one damn thorough assessment. She asked enough questions that she got everything out of me! Especially, the important things I had forgotten, like I’d run out of Valtrex and started taking my Acyclovir until I could get a refill, and that I’d been taking Tussionex but nobody had prescribed it. I was using a script from May.
I wasn’t hiding these things, I had forgotten.
I got the standard Chest X-ray and sputum culture.
My X-ray was clear. Go me, except, sometimes I get so angry at negative tests.
I rely heavily on gut instincts. If I know I have something wrong, I want my tests to prove it. They didn’t. I look fabulous. This is good.
My cough is viral and maybe the lugies are coming from my sinuses. I’m getting a CT on Monday.
I have always had some problems with both my lungs and my sinuses, especially during the holidays. This is a yearly occurrence. It’s like tradition. I get sick the week before Christmas every year.
The sickness has just been multiplied in severity due to my co-morbidities.
So with a little fluids, and some more rest, I was out of there! My husband got to take the time I was holed up to go shopping in the madness. Life’s good, and I’m going to recover from my suffering sometime.

Friday, November 28, 2008







Live well, Laugh often, & Love with all of your heart!

Holding It Down for The Hometeam

No more Boston vs. NYC.
No more Sloan & Kettering vs. Dana Farber.
Definitely, no more Red Sox vs. Yankees.
Those decisions are too difficult to make right now.
I have made a decision, however.
I’m going to hold it down for the home team.
I’ll include the college in on this too.
Dartmouth men’s soccer just beat out BC 4-2 in a shoot out. They’re on their way to Wake Forest in the NCAA Tournament.
So there.
Lebanon was named the most recession proof town in the country by
I like the way this sounds.
I’m rooting for the underdog because they have limitless potential.
They have David’s House. They have my first rockstar care team.
I have trusted them with my life.
It really, genuinely, bothers me that they’re 41st in the country in cancer treatment.
They should be in the top ten. Immediately.
I’d like to infect them with the “competitive spirit” I hold on to. I play to win.
Maybe, this has helped me get this far.
I used to treat codes like I sport. I was in it to win it. When I practiced, I’d take the defibrillator and holler “BOOM” whenever I hit the chest and make the mannequin jump.
Yes, crashes and codes require practice, generally on mannequins.
Death is not fun, but cheating it is.
Codes or intubations or crashes are certainly not as fun when you are the one on the bed.
If I can think during these periods, and a lot of times I can’t due to lack of oxygen, crazy heart rate, and panic, I would be asking to push my own meds and paddle myself.
I don’t like that someone else gets my job. Mostly, I don’t like that I am on the wrong side of treatment.
I think my attitude has gotten me this far.
Hopefully I will get me farther, right along with NEW HAMPSHIRE!
We have the creators of Timbaland. Ben & Jerry’s is close enough, and they used to donate a lot of ice cream.
We have mountains, hiking, biking, ski areas, lakes, boating, and broom hockey. How could you not love it?
DHMC now has a “Patient Online” feature. Check this out at
I have more ideas to extend the online patient network for improved continuity and ease of care for everybody, but I’m too tired to talk about this.
For all the good news associated the my down home cancer center see
DHMC could be a transplant destination. I’m all for the luxury experience of treatment.
Dana Farber is in the process of expanding its “Pavilion,” the penthouse suite of care for the rich and famous.
Barbados has fertility get aways that boast a marked improvement in outcomes from their stateside counterparts.
Everybody underestimates the power of relaxation in healing. If I could afford being treated at a spa, I would take it. I’d call it my cancer vacation.
For now, I would settle into staying in the country.
But since I can’t, I’ve chosen to hold it down for the home team, and don’t you forget it.

Thursday, November 27, 2008

Black Friday Eve

I will not be going shopping EARLY tomorrow morning, for obvious reasons.
I have put in some orders to my brother and his girlfriend who still brave the post turkey morning sales.
I am still holed up in the house, in isolation, but now with a monster cough.
Monster cough has been here since last Saturday.
It’s the type of cough that starts and needs to keep going until I can clear the spit from my airways and breath again.
It’s the stop, stare, and wonder if that woman is going to die cough. It sounds, to everybody else, that I have some severe problem.
I have a pharmacy I’ve been tapping all week.
Right now, I’m curled up in bed with a bottle of Tussionex. I don’t feel well.
I’ll check my lungs later. I was a little wheezy the other day, or I was audibly wheezing the other day.
I had trouble getting through to anyone. I am so tired. I was too sick to keep dialing numbers to find a professional opinion. I stopped and busted into the medicine cabinet. I loaded up. I’ve been a little loaded since then.
I’m still nauseas. I had sweet potatoes for thanksgiving with a couple bites of turkey and stuffing. I took my marinol and it didn’t work.
I’ve been nauseas. I think it’s from whatever is messing with my respiratory system.
I’m entering the post transplant crazy period. They should really coin a term for what I feel and what started to happen 6 weeks out.
Just to give you an idea of how long I've felt like this, see the picture to the right. This is my sister and me, at Thanksgiving, in 2006. That was two years ago.
I’m getting grouchy. I’m in pain. Joint pain that is so severe it hurts to get out of bed. When X touches me or runs into me, I grimace. X is a rough boy. I have bruises all down my legs from playtime.
So I will not be going out and asking for more suffering to shop. Right now, I am not going to miss it.
I do miss Yanellie, Chris, Isaiah, and Victor. They couldn’t make it this year. The kids are kind of sick. I don’t have the energy. This is a break and tradition.
As far as black Friday, there was some talk of going to a city, but that city got changed to Lebanon.
I don’t know if I would go in any city, especially when I’m barely 110 lbs with no muscle tone. I can not pull my cancer card there. DENIED. Even me, as a masked, gloved, bald cancer patient does not get first grab of the toys.
I need something special for my boy. TOO BAD. You better be able to fight.
T goes to Toys R’ Us in Times Square, the epicenter of Manhattan.
I can barely go through there on a regular day. The mob is too much to handle.
T would take me down over a toy. She likes to “throw bows” anyway. Those elbows are pointy, with a lot of muscle and aggression behind it.
Actually, if we went head to head for a toy, she wouldn’t need to.
I’d take one look at her and say, “Oh, hi. I was just taking this off the shelf for you.”
I’d hand it over in a heartbeat and pray she didn’t hurt me.
Fortunately, I don’t have to worry about this. She has my back. I’m a lucky girl.
I tried, I really wanted to make this positive and uplifting for the season, but I'm not about to lie.
This season will be difficult. This is not because of the shopping (not all). I'm missing the X-mas parties, the bar gatherings. I won't be doing the "cookie day" that I always thought I'd do with X. He won't be coming home to Brownies. He'll be coming home to what he's got. I won't be taking him to see Santa and waiting in crowded lines with other infectious kids. I'll be here, but my mom steps in, he'll be treated right. His daddy is also having lots of fun doing the shopping this year.
I'm going to take a couple hours to sulk and feel bad for myself. Then, I'm going to flip the script, and decide what X and I WILL be doing. Starting tomorrow, it's decorating and Christmas movie time.
Plan your course of action if you’re going out in the am. If not, remember to do whatever you enjoy doing.

This REALLY happens


I made it to Spain! A friend from my school days lives there now!! Besos y abrazos para ti y tu familia!
I’m so excited that I’m internationally interesting.
I’m also getting some love from Savannah, Georgia (Yes, I’d love to visit sometime), Ohio (Thank you Mom’s Group), and Washington State (Hi Shannon).
I’m so excited people are interested!!! I'm hollering a big THANK YOU to everybody for the support.
Thanks everybody for your confidence in me.
I have an idea. SURPRISE, me, an idea?
What I'd like for the holidays, is for me to be paid forward.
We can all afford a promise and five minutes, can't we?
PLEASE write an email and forward it to everybody you know.
I did start this under the premise that, maybe, I had something to offer. I hoped I had insights that might help others. Blogging also combined all my favorite things: art, creativity, design, writing, teaching, and science.
Despite my circumstances, I think I’m exactly where I’m supposed to be.
Here’s how it’s going to go. Create your email like a chain letter, telling a story, encouraging people to read my blog, and then say they have to forward it to everybody in their address book or else they’ll get bad luck or go straight to hell for not supporting advocacy for the sick, disabled, and destitute.
Here, I’ll make it for you:
Put in the subject line
Put all your contacts in the address box.
Then right the following:
One in two men and one in three women will be diagnosed with cancer. We will all, at sometime, be affected.
Hillary is a 26 year old woman with cancer. She’s struggled with her disease for 3 years, and has “exhausted traditional treatment.” Hill is sharing her struggle, successes, feelings, and treatment with people in hopes to ease the fears of some and promote positive thinking among all. See her at
Please forward this message on to all you know and love. We all will eventually have to stare cancer in the face.
If you’re wondering what you can do to help, do this. I’ll accept it as a holiday present. What’s more affordable than a promise? Happy holidays to me.
Remember: Copy this into an email, then put all your contacts in the address box, and hit send.

ZUTTERS, by the way, I will be out of isolation for Feb. You know what that means, it’s on this year. Zamboni’s are giving you a broom hockey beat down!
We have a date for the night before. EVERYBODY.
SOMEBODY. Make sure you get a hold of Robyn at DHMC. I owe her.
Heidi. You were one of my FIRST public supporters who has barely met me. I LOVE THAT. Please bring friends.
If you speak Hillary, that means everyone you know.
I am out of isolation on January 18. I will accept waiting to celebrate until the fifth or sixth or whatever the FIRST WEEKEND OF FEBRUARY is.

Wednesday, November 26, 2008

Confession Time

I fake being healthy to get out of the hospital.
If I’m well enough to convince my doctor I’m healthy for five minutes, I’m well enough to take care of myself at home.
There are some things I can’t hide, like blood counts or fevers, but just about any other symptom is up for grabs.
I’m pretty confidant the Doc’s at DHMC were on to me. I was under their care for a very long time.
I don’t think DF has found me out yet.
Now they have. Hi Melissa.
I’m so sorry you have to be in charge of me while I confess what a bad girl I am.
I promise I would never risk my life to get discharged.
I couldn’t find my cables to show the videos.
I think it may be the cosmos editing me. There is a fine line between sharing and scaring.
I’m doing much better. Thank you.
I did prescribe myself a case of the giggles last night. The medication is called marinol, and I will drink gallons of water if I take it.
I refused this medication for a while, until I sucked it up, remembered narcotics were also severely illegal and I had no problem taking them. I also like the idea of plant based medications.
I should have taken it earlier.
If you are a cancer a transplant patient, you can not smoke weed. You can't eat it either. It's on the restriction risk. It could cause fungal and bacterial infections. If you want to smoke it, you need to discuss this with your NP or Doctor. They will perscribe it.
Some plant based meds still scare me, like Digoxin (a heart med). My pharmacology teacher said Picasso ate the digoxin plant from his yard, hence the pretty pictures with halos. He was toxic.
I no longer am hacking up a lung and sending out ranbow colored sputum. I haven’t had a fever. I’m not breathing pneumonia breath.
My energy is coming back, and so is my hair. I’m about 40 days out of my transplant.
I’m able to eat honey buns again. It’s a scary day when I can’t even down a honey bun. That should warrant a call to the hospital.
Not for nothing, but please remember that I am saying these things so providers are educated and patients understand that their fears and instincts are not unique. No one is alone in how they feel. Someone somewhere has felt what you have before.

Strategic Shopping

The holidays are coming!! Let’s stop and focus for a minute on thanks and giving instead of Thanksgiving.
Okay, enough time spent on being sentimental.
To the right, by popular request, is my sister and I together. She is in the forefront and I'm in the background (As usual). This was taken in July 2008, a couple weeks prior to starting my study.
I'm giving some of my secrets to shopping out. I'm not educated on this subject in any way other than I am a woman and I like to do business. We'll say I graduated from St.P U (St.Pierre University) or The School of Hard Knox, whichever.
The anxiety surrounding holiday spending is suffocating this year. The tension in the air could probably be classified as a layer of the ozone.
Here are some technological “mommy secrets” for those of us who want to provide, but may need to cut some costs.
E-Bay, first and foremost. My shopping is done. I know you hate me. I did it for cheap without sacrificing quality. I shop straight from the Dominican or buy USED. My child won't care.
Here’s the loud down, I try to make money out of money.I’m on a fixed income and I don’t like it. I used to think I was good at making ends meet. So I need to keep it for my self esteem.
It’s another hobby of mine, something I can do from the peace and quiet of isolation.
Most of my tricks are online. First, my favorite, is Upromise. is an online college savings tool that allows you to contribute to a child’s education through on-line shopping rebates and the use of an Upromise credit card.
Do not get the credit card if you may not pay the balances out right each month, this will wipe away any benefit from the rebates. Rebates are up to 8% of your entire online purchase. I forget the amount of money given for purchases with the card, but it adds up!
I would never otherwise be able to save for X’s college.
I have linked this money to a Vanguard 529 account. Upromise offers this service to link the accounts. A 529 is a savings account meant for college expenses that get this, are taxed upon withdrawal at the STUDENT’S income bracket.
If you make $200,000, no problem, the account will be taxed at the $3000 your child makes washing dishes over the summer.
I'm thinking maybe my savings should go to feeding X in high school. He ate four peices of pizza last night, two bowls of spaghetti, and 6 cookies. In high school, I would eat twenty nuggets, all my fries, and a gigantic soda or two full Broilers and then complain BK didn't give enough food, and I have nothing on his daddy. We're in trouble.
This is my personal address If you’re shopping online, but don’t want to make your own account, go to this site, select shop in the tabs, find the shop you want among the list, click to go to the sites webpage, then shop away.
Vanguard offers investment options by age and level of risk. These options are actively managed for you and rearranged based on investment time.
I chose to diversify. The market is scary, and it’s proven over a 15 year period diversifying is more profitable than putting all your money in the S&P or other indexes.
I invest 20% each in Vanguards Growth, Moderate growth, and aggressive growth options, as well as 500 index and bond portfolios.
I am losing money, but it’s free money. DON’T follow my lead and get mad at me if it loses. I take no responsibility for your actions. I made my picks based on my tolerance level for risk and loss and an article in the “Wallstreet Journal.”
Upromise also is connected with an online agency that pays you to take surveys! Yes, you can get paid to answer questions about yourself. The company is called E-Rewards.
I also set up an online savings account through E*Trade. I think discount brokerages are the way of the future, and I receive 4% interest on my money.
To have an online account, I did have to link my e*trade account to a savings account at a local bank. I deposit my money into the local bank and transfer to my e*trade account free.
Four percent interest is more than you will get investing in most CDs, and the money is always available when you need it.
I also always search This site posts the current deals being offered for most shopping sites. Don’t find what you’re looking for? Try or
Also, coupons are back in a big way. I used them before I got sick, when I was actually working. I don’t want to part with more money than I have to EVER. Check out for printable coupons you’ll actually use. It’s amazing the savings.
If this does not satisfy you try or
There are some other risky games I play. Don’t play them if you don’t have time or the financial savvy I’ve be blessed with. My games are risky and will be a completely useless hassle and failure if you do not actively manage it.
I take the money from the credit checks that come at 0% interest with no transfer fee. Often, these “favors” come with strings, so read the fine print thoroughly.
If the deal really is 0% for say 9 months and you’re not going to be charged with a $50, 3% or whatever fee, I write the check to myself for the entire balance.
Oh, the horror! I know I’m going to get a hard time for admitting this. It’s risky business, I admit.
I put the balance in my e*trade account getting 4% interest and pay the minimum monthly out of the account, automatically, when time is up I pay the bill in full, keep the interest, and never pay anything extra to the credit card company. It makes my money work for me! I, essentially, amd making money from nothing.
Good luck on your strategic shopping.

Rock Your Ugly

Thank you Tyra for the idea.
Move over pretty, ugly is here.
Nobody is perfect, so rock your ugly.
Do you think you have flaws? Are you self conscious showing yourself for who you are?
Stop it and rock it.
Believe it or not, most don’t see the minute details you obsess about.
Women, unless you have a unibrow, men don’t really notice your eyebrows.
As far as I know, when I critique other women, I think about how gorgeous they are.
Take your flaws and flip the script. Your “flaws” make you unique.
My scars. My cancer. My bald head. I’m rocking it. I’m proud to be me, and I’ve never had anyone tell me they can’t handle it.
Maybe they have, but I didn’t hear.
I have had people point and stare.
This is EXACTLY why I rock my bald head. I want other people to feel comfortable with themselves during treatment.
I have broad shoulders. I want people to point and stare and hopefully facilitate a conversation about cancer.
A lot of beautiful people on the outside have a whole lot of ugly on the inside. It’s hard to see attractiveness when it’s ruined by a mean personality.
Cancer patients have enough to deal with and our body image should be low on the list.
But it’s not. Do what you have to do to be comfortable. It’s important you LOVE your body during this period, that you like every part and accept yourself as is.
It will help with your psychological warfare against your disease.
Words of wisdom for the day:
Pretty is out. Real women are in. Confidence is now. Rock your ugly.

Tuesday, November 25, 2008

Fight Like a Girl

The other day, while playing soccer with X, he told me I “kicked like a boy.”
Oh, no. That child did NOT just say that. He’s got a little bit of his momma in him.
Along the lines of other funny X stories, he thinks the Christina Aguilera song “It keeps Getting Better” belongs to me. Every time he hears the song, anywhere, he thinks it is because I put it there.
Unfortunately, this song has familiarized him with the word “bitch.”
This word is mean and it has become far too commonplace in the media. I don’t want my son saying this.
We spoke with him and told him to use the word “witch” as a replacement.
In the car, when the song came on, he told me the bad word was too strong to resist. It was taking over his mouth!
I told him to work it out and if he didn’t he was paying the “swear shell.”
The swear shell is a shell we give money too when we say a bad word.
I hate the swear shell. It was obviously not my idea, and it’s always stealing my money!
Then on Weds., as we were leaving DHMC, he walked straight up to a woman and told her “I voted for Obama.”
What?! You’re five, but I didn’t stop him. He went on to ask her who she voted for.
She told him she voted for Obama as well.
Then X proceeded to tell her he liked Obama’s “health care plan.”
Yes. My child is rockstar and don’t you forget it!
Remember, if you have a child like mine or the one that drew the picture on the right, be sure to review their homework. This one is special for you Brynn, and to all the teachers out there.
Stories aside, fight and take no prisoners people. GI Jane it.
I’m starting Cancerocracy. Who wants to join me? My guess is a lot of people are all ready in the club. Patients, survivors, co-survivors, doctors, nurses, social workers, you are all already in the club.
You’re in and you didn’t even know it.
Maybe you think you know what I’m talking about but have no idea? I’ll school you. We all will.
If this fails, just take a look at yourself and Fight Like a Girl!

Inspiration for Me

Okay, okay, okay. I’m going down memory lane today.
I’m going to post a very embarrassing picture from my youth. Front left to right: Cheryl (my roommate), me, Alanna, & Emily. Back row from left: Seival, Sophia, Kishauna (or KiKi), Sandrine & Laurette.
It’s all in the spirit of thanks and giving. Even in the post 9/11 era, it’s important to give back what you can.
I recognized the day after Sept. 11 that EMTs, nurses, doctors, etc. were allowed at ground zero. Reporters were not. I was a communications/journalism/design major in college at the time.
I get more access and information as a nurse than I ever would as a reporter.
I was not in Manhattan 9/11. I had plans to cut class and shop in NYC. I even told my family I would be downtown the night before.
I’d been living in Westchester for 3 weeks.
My family thought I was in downtown Manhattan when the planes hit.
Thank you Dr.RZ. I had an 8am class. I went since no college student in their right mind would get out of bed at 8.
I emailed my parents after the first plane hit, minutes before Manhattan, Westchester and wherever else lost all communication with the outside world.
I sat around watching TV with the class and Daisy, who is still my girl today.
Outside was gorgeous, but haunted by the silent sky sans airplanes and the never ending sirens.
The air smelled like death. NY did for months. I’ll never forget the smell.
I knew, despite my talents, some news channel would snatch my face up and put me in front of a camera. I’m not that cut-throat.
This is why I learned to design layouts for publishing, write grants to pay for my ideas, pen like a author, be a trusted confidant, one of the insiders in social circles. Most importantly, I learned to be a provider.
I want to do it all.
I’ve found inspiration from so many places: from books to teachers to doctors, but my favorite inspiration right now comes from the waiting room, sitting with the rest of the baldies.
Remember to enjoy your family this week.

Dictating Democracy

“Will Americans continue to prey upon one another, have commercial rivalries, and yet expect to dictate peace to the world?” - Gandhi
I’ve had a lifelong interest in peaceful protesting.
In junior high, I looked like a bonafide hippie.
In high school, I always wondered how I could help, but couldn’t find my way alongside all the other distractions that come along with being a teenage girl.
I’ve dropped the hippie garb for some classy fashion, but I kept the basic importance, I want the world to be a better place.
I’ve been a lifelong “Cause Head.”
I think we should think up a term to coin for what I do and people like me do. It needs to be something current and vogue to effectively convey who we are, all of us who want to peacefully change the world for the better.
We’re a new breed of activists. I’ve taken lessons from all the actions that spawned change in the past and adding some new tricks.
I protested in public many times, but now, the protesters can’t even agree on what to yell about. There are always ten different causes in one parade.
And honestly, I don’t think anybody in power is listening anymore. That maneuver has been tried and died. It does not have the media on its side. In the words of Joan of Arc, “an invasion of enemies can be resisted, but not an idea whose time has come.”
My parents worried in the post 9/11 environment that I’d end up on “some list, somewhere” and the government would come and snatch me up.
My mom attributed this to my connections with Amnesty International, among other NPO (non-profit organizations) that would like to see some changes.
I studied social interaction and structure. This is “The way in which society is organized into predictable relationships, patterns of social interaction (the way in which people respond to each other). These patterns etc, are to some extent independent of the particular individual, they exert a force which shapes behavior and identity” See for some basics.
I forgot this has always been a much loved interest. My favorite interest is the world around me and the people who inhabit it. Thanks to my cancer, I’m spending some time getting to know the world.

Monday, November 24, 2008

Embarassing Doctor Story

I have a VERY EMBARRASSING Doctor story I’ve been holding in.
I want to protect the innocent. I’m going to keep some details to myself, but I just can’t hold this silliness in any longer.
I’ve traveled all over New England and seen so many specialists I can’t remember their names. Sometimes, I will combine the names of two doctors that someone in the family is seeing (ex. Murray Stone, a combination of Dr. Murray, a gastroentological surgeon at DHMC and Dr. Stone, leading genius behind the first clinical study I participated in.)
It’s all very complicated.
So on one of my many visits, I was having an extremely rough day.
It was difficult traveling to the hospital. The traffic was nasty. We got a little lost.
I was trying to entertain some friends and make a “mini vacation” out of the travel, and it was just too much for my sick self.
I had my niece and my son with me, and during the appointment, I had to leave them with friends.
In trying to organize the hotel, the transportation, my consult, my friends, and the kids, I dropped my wallet in the hotel room.
My wallet containing my ID and my insurance information, without which I can’t receive treatment.
I discovered this when I went to register and the nasty woman told me I couldn’t see the doctor. I started to cry. Then I screamed, hollered, and demanded a manager.
The manager was a little more human, but still heartless. She kept saying “It’s just one of those days.”
What? “Bitch, I’m having one of those lives, how dare you make it MORE difficult.” I kept thinking.
Anyway, I made it to the waiting room, hid in a corner, closed my eyes, and wiped my tears. I’d be damned if another person saw me cry.
When the nurse called me in, I got up, turned the corner, and whoa, almost ran straight into this man.
He was attractive. I noticed. How could I not when we almost ran each other over?
Sitting in the consult room I started thinking, “Wait a second, maybe, that was my doctor.”
Since diagnosis, I’ve told my friends there is an attractiveness quotient to treating me. Apparently, I only get 8s or up on the scale to care for me.
Yes, Dr. Hottie walked in the door. Dammit.
In consults, you sit, talk about options, take notes, ask questions, etc.,etc.,etc.
Dr. Hottie notified me that I was having trouble locating a donor that matched, because somewhere along the line, my parents were related!
Yes, I’m an in-breed. My “c locus” has the same gene donated by both my father and mother.
This is embarrassing moment number one, but it gets worse.
Dr. Hottie had the cutest, superior, holier-than-thou accent. After the consult, I was taken into another room for my assessment. This is just how it’s done.
My neck gets poked at, my shoulders, my stomach. My heart gets a listen along with my lungs.
There are nodes in the groin area. Nobody really assesses these since I’ve never had disease “down there” before. Doctors generally take my word that these nodes are unchanged. Apparently, this guy is thorough.
“Drop your pants.” He stated.
“Excuse me?!” I said. I really meant for it to come out as a polite “Excuse me? What did you say?” but no, I was defensive and having a bad day, so the comment came out “EXCUSE ME, I JUST MET YOU. I require dinner and conversation before I do THAT.”
His hands went up in the air like he was about to be arrested and his cheeks turned bright red, “You you you don’t usually have this assessed?” he stammered.
Dammit. I am so embarrassed. I need to control myself. Better yet, I need someone to control ME. This poor man never saw me coming. They never do.
“Oh, yes. I’m so sorry.” I said, averting my eyes and unbuckling my belt to follow directions.
Do you think it could get any worse? It did. I was not prepared to be giving peep shows. Did I have on my scandalous Vicki secrets? No. Did I have on conservative granny panties? No.
I had on little boy style underwear with “KISS” written across the front in big bold letters.
I’m pretty sure he read the message. I think I might die admitting this. I have never, ever gotten my clothes on faster.
Just thought I’d send out a little laugh at my expense. Don’t take yourselves to seriously. Happy Holidays.

Relationship Restrictions

“Love is supposed to be ridiculous, spontaneous, and beautiful.” -Anonymous
Relationships should be placed on the post transplant restriction list.
It should appear right next to gardening and crowds.
The new rule could state: No dating or spousal stress for a minimum of 100 days to one year post transplant.
Alcoholics Anonymous has this rule. Relationships take a lot of energy that should be focused elsewhere, for example, yourself and getting better.
A person should know who they are, what they want, and how to meet their needs before trying to dedicate themselves to another person.
I think the nation should take note of this. We Americans should be able to take care of ourselves and our citizens before we go throwing money and services at other countries.
Back to the subject.
The health implications of stress can be catastrophic to an immune system that all ready does not know if it’s coming or going.
Stress makes people immunocompromised. It increases the release of your natural steroids.
This is why people get sick over the holidays, after a funeral, or during finals (you all will be just fine).
Look at what happened to me. I had one BAD day and BOOM, back to the hospital I go with a respiratory infection.
I’m always telling myself, “I’m not going to deal with this right now.” Whatever this is.
I don’t think I’m able to dedicate myself anyone at this point. I’m too focused on me. I’m in “survival mode.”
I also wonder, “If I let go of my feelings, would I lose the little control I have left?”
I share just about everything, but every girl needs a little something for herself. Just call me “hush-hush” on this subject (and some others ;)) I like to keep secrets.
Moral of the story, in sickness, expect yourself, your spouse, your daughter, mother, sister, etc. to be a little selfish. It’s a survival mechanism. Relationships cannot always be 50/50, some days it needs to be 90/10.

Twin Telepathy

Heather’s twin telepathy has been on overdrive recently.
Yes, twins do share a special bond that is incredibly difficult for others to understand.
Heather called this morning, minutes after I woke up, saying “I was just calling to see if you were doing okay?” She asked, in that voice, the one that says she KNOWS something.
“I was just lying in bed wishing someone was here to make me breakfast so I didn’t have to get up.”
“Oh, well I was just a little short of breath, and my chest started to hurt. I was worried I was having a heart attack but then I thought it was you.”
Okay, okay, okay. No lying to Heather. She all ready knows.
She always already knows, maybe not the extent, maybe not the whole truth, but she has an idea and she’s going to ask questions until I confess.
My chest does ache, my rib cage. It’s a little uncomfortable to inhale. I have been having some pain in my chest, it just feels really full, it hurts like chostochondritis, NOT A HEART ATTACK.
Not that I know what a heart attack feels like, but I’ve heard it described enough.
I’m happy that we can share my pain. I think it takes some of the pressure off me.
Heather knew the day I got pregnant so that was the day the phone calls started, “Hill, what’s been going on? Has anything changed?”
I didn’t even know I was pregnant yet.
Anyway, I confessed to my sister that I don’t feel well. I feel downright nasty. I hurt all over. I’m coughing up junk, and sometimes I can hear wheezes, audible across the room.
I’ve been medicating myself for these problems.
I have my own little pharmacy in my bathroom: Kytril, ativan, and marinol to stop throwing up. I have ginger ale in the fridge and I’ve been eating a lot of toast. Then I have my tussionex (a cough suppressant) and some ambient.
I do have augmentin to take, prescribed on my way out of the hospital.
Praise Jesus I did not wait and try to fight my symptoms myself. We’ll never know what my sickness would have progressed to if I did.
I’d rather be complaining about some pain and nausea than be silenced up in the ICU on a vent.
Heather had an idea I might be medicating myself.
What I really want is some steroids.
I never thought those words would ever come out of my mouth, but I’d really like to stop my lungs from wheezing, get an iron stomach and not be nauseas and throw up, and have some energy.
I’d like to order all those things please, just one of each will be fine.
I’ll be posted up in bed all day with my meds and lots of water. Heather has reassured herself that I will be fine. She’ll call back at lunch, or at any other time I start to feel badly.
Happy Monday people. I made you a video, but I can’t find the connector wires to download it. Either way, Happy holidays.

Show Some Love

I forgot how much fear there is related to cancer and approaching people have with cancer.
What do you say? How do you broach a subject as depressing and life altering with someone you ecounter.
In my experience, people abide by the social norm and don’t bring up the “C” word in conversation.
I hear the word “cancer” less than I hear the other “C word” out of people’s dirty mouths.
I don’t know what they are worried will happen if they say it.
Does it have magical powers like Beetlejuice? Don’t say it three times or you’ll get diagnosed.
I don’t know if people think I’ll lose my mind from the mere reminder I have cancer.
I all ready know. I have probably dealt with it, to the best of my ability, with my close friends and family.
Asking how I am feeling will not send me over the edge. I may burst into tears. This is not your fault.
When I was diagnosed, my favorite reactions came from friends who had chronic, life threatening illnesses.
Colette, a friend from college with MS said, “Awww, Hill, I can’t believe it, but I’m going to say something horrible, now you understand.”
I joined a club on the day of my diagnoses I didn’t even know existed. I’ll call it a “Surviving Club.” For initiation, you have to have feared for your life, you have to made sacrifices, you have to have turned down things you really wanted to do, and you have to misunderstood by everybody healthy.
In this “group” are friends with diagnosis that include MS, Sickle Cell Disease, Hepatitis, Congenital Heart Defects, lupus, the list goes on and on.
We are all defective. I like to say we are “perfectly imperfect.”
Since my diagnosis, I have changed. I’ve changed the way I look. I want to look good for myself, but also because I want to be looked at. I don’t know if this is the secret I think it is.
I want people to see me to think “Awwww, she is so young.” Or “Damn, that is so sad.”
I want people to see my bald head and stare. I’m hoping it’s along the lines of “That could be my daughter, cousin, sister, friends, etc.” and “I feel so bad for her.”
I want to look relatable so people can see that my situation can happen to anybody.
I want to stand up and represent for the sick so they don’t feel they have to hide anymore.
I hope this gives me a platform to comfort others who are in my position and give them permission and the strength to express how they feel and who they are to everybody they encounter.
Knowing this, maybe you will feel more comfortable approaching the subject, at least with me.
Thanks MJ, Melissa,Jenna, Killy, Kristen, and Nirva for showing me some love this weekend and keeping me amused. On the right see the girls from college that hold it down for me.
Not everybody gets this kind of support. I hope you're feeling more comfortable showing some love.
Each person’s response to illness is individual. Many are sensitive. If you do question how to react, pulling away is the wrong answer. Ignoring the problem by disowning the person is the worst you could do.
If all else fails, your safest bet is, just to pretend everything is normal and show some love.

Sunday, November 23, 2008

Boston is CRAZY

The first time I trekked back and forth to Boston, I had to call Yanellie, a lifelong New Yorker, to holler about Massachusetts drivers.
“These people drive in the breakdown lane LEGALLY! Where am I?” I yelled into the phone, half laughing and half fearing for my life.
Let me translate: I called a New Yorker to complain about Bostonian driving. I called a woman who reverses down one way streets so her car is facing in the appropriate direction when she doesn’t want to circle the block.
There is a reason the term “Mass-hole” exists.
“I’m not driving 150 miles to treatment to get killed in transit.” I told her.
Believe it or not, there is a benefit to all this travel. Studies have correlated travel distance to treatment and positive outcomes in cancer patients.
Sometimes you do have to go the extra mile.
In an article published in Sept. 2003 in Journal of the National Cancer institute it stated, “patients who traveled 15 miles or more for their care had one-third the risk of death than those living closer. Moreover, for every ten miles the patient traveled for care, the risk of death decreased by 3.2%”
DHMC is 32 miles from my home. Dana Farber is about 160 miles.
Ha! I have found a way to kick “the odds” ass.
Boston does have other good qualities. It is started to woo me away from New York.
It took 250 million dollars to rebuild Yankee stadium, and shockingly, some of this came from the taxpayers.
I like the old stadium. It was in great shape. Has anybody every stayed in that area of the Bronx for a couple hours after the game.
Probably not. You run faster than A Rod screaming to your car, taxi, the six, whatever, because that neighborhood is notoriously dangerous.
How many kids do you think stare at that stadium every day, but can’t afford a ticket? That money really could have been used to improve the school system or social services. Fix the damn slums please.
Boston’s sports teams contribute to the hospitals. I love this!
Mass also has this great program called “Network Health.” This is health insurance and care based upon an affordable percentage of the individual’s income.
What a novel idea.
The Ivy League colleges have all ready instituted this method for the cost of tuition so big name, top notch schools are affordable and accessible for everybody who qualifies.
I can go to Dartmouth for $8000 yearly based on my income, and that is before scholarships.
These guidelines have been instituted so nobody goes broke paying for health care or education.
SWEET. I think we should replicate this idea all over the US.

Coming Home

I came home! Yes, I got a get-out-of-the-hospital free card. The plan went better than planned.
When exactly does that happen? Specifically, when does that ever happen to me?
I guess it was time. I can’t have bad luck forever. It’s the Law of Averages. Science can not treat me like this forever.
My labs, I hear, looked great. I did not spike a single temperature (of course, because I was in the hospital and they want evidence). My blood culture was negative. I don’t even know that they did with the sputum.
I was drinking a lot of ice water so my average temperature kept coming out to 96.6. Whatever. Now, at home, it is still behaving. I’m at 98.9.
I did force Kristen to touch me when she woke me up at night so I could prove I do have nasty night sweats.
It amazes me how few night nurses actually touch their patients while they’re sleeping. During my first transplant, my fever broke, I was drenched through my clothes, too weak to call for help, in too much pain to move, and shaking with the chills for what seemed like an eternity.
Finally, when a nurse came in, I asked her to touch my head. Her shock surprised me, but she came through with something to make me more comfortable.
The nurses are fabulous on 4C. I had some fun with them despite my misery. You can see some of them in the picture on the right.
Dr. A and Co. came in and said I looked great.
I had forced myself out of bed and changed my clothes, an obvious progression from the days before.
Something amazing I discovered while being a patient at The Farber, my specific doctor is on-call for me every time I call!
He said the specialists agree to do this for the patient’s sake.
WHAT?! This is an amazing concept I NEVER EVER thought would be put into practice.
The first time I had him paged, I argued with the page clerk that I wanted the allo transplant on call, and I didn’t believe her when she told me she had to page my doctor.
This part of my treatment is even better than room service at Brigham & Women's.
When exactly do they get a break? I’m beginning to really wonder if this man remembers what his family looks like.
How can you not trust that kind of dedication?
I don’t think I’d ever be a doctor specifically due to the call factor. That reason and I am an alpha nurse who loves nursing practice for its fundamental differences from medicine.
I had received a couple doses of Ceftaz and got sent home with a script for Augmentin.
I still have phlegm that wants to be expelled. I am exhausted, but really, I did just have a transplant about 42 days ago. Relative to what I could be feeling, I’m good. I intend to stay that way. Thanks for the support.

Saturday, November 22, 2008

The Great Escape

I’ve been getting some good stuff for my pain and nausea. I think it’s a little too good.
My brain is fuzzy from the pain control and I don’t care about any of the problems outside my isolation room.
And I mean ANY.
That’s what 0.5 mg of Ativan will do to me.
I know, I know. I’m a light weight, but I am a little person.
On Weds. I was at DHMC to get perked up. They gave me meds to stop the pain and the vomiting, and effectually knocked me out so I could sleep during my treatment.
I was soooo comfortable.
So when Alissa called, my beloved friend and cousin, who was taking care of Xander while he was home with strep throat and an ear infection, I didn’t think anything was amiss.
“Hi Lis” I cooed into the phone.
“Hillary, where are you? Are you at your house?” She sounded a little panicked.
“Noooo” I said in my sign song, I-don’t-care-about-anything-now voice. “I’m at the hospital.”
Alissa started to cry. “I CAN’T FIND THE BOYS!” She cried, frantic into the phone.
“Oh, Lis, Don’t worry about it. We lose them all the time. They know their way around. They always come back.” I said, being completely USELESS in my drug haze in alleviating her fears.
“It’s okay” I said, hung up the phone, and fell back asleep.
We have a lot of space and a very close neighborhood. Not only can L and X run amok over the 100+ acres that surround my house, but they’re welcome in homes all over the neighborhood. They could have wandered over to a friend’s house, to my house, to both their grandparent’s houses.
There are a lot of options, and sometimes, they do sneak off on us on purpose. They’ll hide in trees, in the sand pit, in the middle of the circle. They think it’s hysterical.
They do know the boundaries, but our safe boundaries are bigger than most.
Alissa and I grew up like this and we survived. We think it’s an important aspect of parenting to give children some autonomy. We’re training them for the real world. They can “explore” and “go on adventures” in a safe environment, then come back to us when they’re done, dirty, and hungry.
Just like we hope they’ll do as teenagers and in college.
This won’t be happening anymore. We’re tightening the reigns. The boys took it too far.
The boys were lost!
Alissa called the family business, which got shut down for the search. Her husband raced his one-ton dump truck home at 80 miles an hour to help search.
He wasn’t concerned about being pulled over, since the local cops had all ready been called. They were at his house while he was racing home along with the rest of the workers at St.Pierre, Inc. who abandoned their post to rescue the great grand kids.
I was posted up, asleep, at the hospital, completely unaware of the chaos surrounding my family (or framily, friends that are family).
The state police and the dogs were called in too.
Poor Alissa. Our boys were found across the street at a neighbor’s house.
They had actually entered the house to play with their toys, specifically a talking parrot.
Fortunately, they decided to break into a house that belongs to our friends, friends who probably laughed when they heard about it.
Ethan, X’s other surrogate mom Jenn’s three year old son, found the boys. He heard them in the neighbor’s back yard and said he wanted to go play.
X and L were jumping on THEIR trampoline.
We have a trampoline. I guess they decided theirs was better.
Thanks Ethan and Jenn. Capt. Smith took the boys aside and gave them a talk. Jenn made Ethan listen too. I’m sure she is aware that if it was a weekend, Ethan and Colin (her 5 year old) would have escaped with the boys too.
It could happen to any of us. We love our neighborhood. We love the trees and the freedom it provides to explore. We let our kids run from house to house to house to play, but they are ALWAYS supposed to tell us in advance.
Apparently they forgot. So that just added to my eventful day. Try not to judge that we lost our kids. This is how we were raised and this is how we will raise our kids. We do keep a close eye, but these things happen.
On the bright side, we know our kids feel safe and enjoy socializing with our community. I think we’ll all look back on this someday and have a great laugh.

I'm Driving The Nurses Crazy

I’m driving the nurses crazy.
All yesterday and all night long every time I bend my arm the alarm on my infusion pump will go off. The pump has a terrible screeching beep that gets louder and louder.
The first beep is tolerable, the second may send me over the edge.
“Partial occlusion” rolls across the screen, telling me the problem it wants fixed.
The damn thing will not stop screaming until it is fixed.
Gggrrrrrrr. I it’s driving me crazy and I can barely move my arm.
I hit restart, the noise goes away, and the pump starts dripping again.
Except, the nurses outside have all ready heard my pump go off.
They are all ready up and running around the unit sticking their ears to doors wondering whose patient it is with the bad pump.
They are all trying to fix my pump.
Except, by the time they get to the doors, the beeping is gone!
Hey all look at each other for a second and going back to their posts.
Then it happens again, over, and over.
Until my nurse realizes it’s probably me fixing the pump myself and they can just relax.
Sorry for the inconvenience ladies.


Brace yourselves people, what I’m about to say and relay has shocked even me. What follows is a survey completed by The Tyra Show.
Yes, I’ve been condemned to a minimum of three months day time television while I recover from my transplant.
Tyra brought on all sort of cute faced, innocent looking teenage girls to talk about their sex lives. These girls are the girls next door, but they are getting freaky with the boys next door, across the street, down the street, and over the tracks. WHOA. They have had more partners by 15yo than I have. They all have STDs.
• What she found is: On average, girls are losing their virginity at 15 years of age.
• 14 percent of teens who are having sex say they’re doing it at school.
• 52 percent of survey respondents say they do not use protection when having sex.
• One in three says she fears having a sexually transmitted disease.
• 24 percent of teens with STDs say they still have unprotected sex.
• One in five girls says she wants to be a teen mom.
• About 50 percent acknowledge that they’ve hit someone.
• One out of three teens has tried drugs.
Ugh. What the hell is the world coming to? It was like this when I was in school too, we’ve all known those girls. Now, I think there are just more of them.
Most of us have gone through dating, but now we cross our fingers and hope to make it out on the other side disease free. If you’re lucky enough to get dinner and a movie eventually you’re going to have to confront reality.
So let’s be real for a minute. A screening process is necessary in getting close to anybody.
I was twelve when an acquaintance died of complications from AIDS. She was thirteen.
Maria was raped, and being the 90s, the progression of her disease could not be stopped.
Now, HIV prophylaxis does exist. It can be given right after exposure, but it is NOT the morning after pill.
You don’t know about it, because treatment is a LONG, SEVERE, PAINFUL process with risks such as liver failure (or death).
Better to not go there up front if it is under your control. This option is for providers or individuals who have been stabbed with needles (it happens) or persons who have been raped.
This is not the 60s. Take care of yourselves!
HIV infection has been correlated to lymphomas, not like that is the worst disease you need to worry about if you’re infected.
Though I talk a good game, I have been solely with my man for 9 years, that’s since I was 17.
I have dated since then, but J and I always had the mutual respect not to risk each other’s health and lives.
I’m going to shock you, again, I recommend lovers for those of you running around: clean, monogamous, hot lovers. If you’re going to be promiscuous, don’t spread your legs and diseases.
I think being a LADY is more important than being experienced.
Even though I’ve grown up with some wild girls, it still shocks ME just a little how women (or teenagers and girls under thirteen) treat themselves.
One in four young women, 14-19 years old have or have had a STD.
This problem is all over. Don’t think I’m just talking to the youth, there was a venereal disease outbreak in an affluent retirement community in FL. Owners and renters there must be 55 years or older.
Go ahead with your bad selves, but don’t pretend like I’ve never treated someone over 70 years old with AIDs who just picked a lover to point the finger at.
I know about you.
There are websites dedicated to knowing your partner. There are dating services solely for people with health diagnosis. Use these. You do not have to be monogamous, you just have to be real and careful.
This is how the world is, there are now scan cards available from inner city clinics with a website and an ID number so you can hand a mate your card and check out their disease status online. This removes the embarrassing discussion some people do have and everyone else should have which begins with “When was the last time you were tested?” or “Do you have any disease I need to know about?”
Remember, or realize now, there are diseases, such as HPV, that are difficult to diagnose in men, but are clear and disgusting in women.
This means if you intend to hit it with anybody, and are concerned for your body, you need to do something crazy like KNOW and TRUST your man.
It is becoming a long lost art, but some of us do get to know someone in advance of checking out their sheets.
Here are my personal general guidelines:
Do not make decisions high, drunk, or at 3 am after a night in the club, your hormones are ruling the roost. If you DO, always carry protection.
Always consult a friend. Women get beer goggles too. Nobody wants THAT regret, along with all the others that come with it. Confused, please reference “Knocked Up” with Katherine Heigl. Get on Netflix or head to Blockbuster now. If I taught health, I’d show clips of this.
Along these lines, NEVER GO OUT BY YOURSELF. Do not accept drinks that you do not see prepared even from the bartender. Date rape drugs are tasteless and the evidence is gone by the time you wake up.
Never leave a girl behind. That’s how you wind up on posters and the evening news. Our marines don’t do it, neither should you.
If you can’t buy condoms, men and women, you are not mature enough to have sex. Likewise, if you’re embarrassed to be seen at Planned Parenthood do not pass go.
If you don’t know what a condom is, how to use it, or what Planned Parenthood is stop reading right now and search it.
If you can’t say “condom” to the person you’re with, how the hell are you getting naked?
Get references. Know a friend, a family member, I don’t care if the person you know is just in the same damn gang and drives the get away car, know more than just what they’re telling you.
Check out his baby’s momma, ex-girl, ex-wife, whatever. She is NOT a chicken or a hood rat, she is you in the future.
Please, pick up your mouths off the floor, then seriously consider sending this to all the “girls” you know. The worId is going to hell in a hand basket, If “kids” are old enough to read this, they need some lessons.

Friday, November 21, 2008

At The Big House

I’m spending some time as an in-patient for a possible pneumonia. My temperature has been stable today. I’m just so tired. My body wants to sleep to fix itself.
I’m also in so much pain. I have my generalized daily pain with a viral throat pain. My rib cage hurts from coughing. I can taste the pneumonia when I breathe and cough. It is disgusting. I did get a sputum sample for the labs, along with given 7 vials of blood, blod cultures, and bacteria from a nasal lavage (ouch, just get it over with quickly).
Rumor has it I will probably be here until Sunday, at a minimum, then I’ll be released on Cipro. The plan has been already laid out, but we all know what happens to the best laid plans.
I feel hazy, like I’m half awake. I can’t think straight.
When I get upper respiratory infections I am miserable. It’s scary to cough and cough and cough and have to expel whatever is in your airway before you can breathe normally again.
I don’t know if any of you can relate to this problem.
I’ve had so many lung problems, starting at 6, I could feel this coming on before I had “typical” symptoms. I kept insisting and banging down the doors so my providers were aware and on guard.
Others, too, in my position, should verbalize their unease with how they are feeling. Every person presents differently. Unfortunately, not all viruses, infections, diseases etc. go according to the text book.
Medicine is mostly science, but still part art.
I’m a very lucky girl. This was caught early. Most people are readmitted to the hospital at some point after a transplant. This is COMMON. This is NORMAL.
It does not suggest a decline in my progression. It’s a bump in the road. I will be just fine very quickly.
No worries.
I’m not feeling so well. I’ve been sleeping for the most part of my stay at B&W’s.
I fell asleep as soon as I reached my bed about 7pm.
I was woken up to have my blood drawn and a final nursing assessment at 6:45 am.
I fell back asleep and slept until 10am when Alyea, and his Doclings, showed up. I stayed awake to let the nurse do her assessment.
I fell asleep again and awoke around noon, so I could eat a little and take a shower.
At that point, J made it clear he’d like to spend some time together not watching me sleep. I’ve stayed awake since then. We did some online Christmas Shopping (not buying, it was like window shopping, we’ll call it screen shopping)
Melissa (aka EmJay) came around at 2pm. Killy came at 4 pm.
Now it’s 6 pm, I’m going to get my dinner and fall asleep again. I’m so tired my eyes hurt. I’m having trouble typing.
My IV is in the crux of my elbow (the ante-cubital). This is a big pain in the ass since everytime I even think about bending my arm an alarm goes off.
Not just any gentle alarm, a screaming, screeching, ear killing alarm.
I figured out how to run the pumps, since I just could not take it anymore. They’re different than the ones I’ve used previously, but they all function on the same idea.
Things are looking good. I’m relaxed. I’m going to sleep as much as my body would like. I’m going to take care of myself. I’m going to spend some time by myself.
Still, feel free to hit me up on the cell if you want to talk or you all have my emails.

The Potato Chip Hater

I’m going to leave out details on this post. I won’t be telling you the medical center or the unit where this happened. I’ve been to quite a few in the past couple days. What is important is the situation and how it made me feel.
Sometime earlier (SShhh, I won’t be telling), I was sitting in isolation, barely awake, and trying to pack in some calories before I fell asleep again.
I was eating chips. I’ve had a CRAVING for chips ever since my transplant. They rank right up there with honeybuns.
I’ve never really eaten either of these before, but if my body wants something, and I don’t think my stomach will send it back, I’m going to eat it.
While enjoying the ability to eat, a nurse came and told me that potato chips cause cancer.
For a second, I stared at her in shock. I was speechless. ME! SPEECHLESS!
I reached in to my bag of greasy heaven, took a fistful, put it in my mouth and started eating, thinking about what this woman said.
Obviously, I all ready have cancer. I have lost nine pounds. I am nauseas. I’ve barely eaten anything since Monday. I’ve been throwing up and have diarrhea.
I can handle chips since the salt seems to calm my stomach. My first transplant round, I would eat olives by the jar.
Do people not think? What did she think I was doing curled up in the isolation room at the cancer center with my barely there hair? What exactly was going through her mind with this comment?
“You think this gives me more of a risk of cancer than the chemotherapies I’ve taken?” I shot at her, my eyes glaring, screaming “Dumb B****” at her with my mind.
A scary side effect of cancer treatment is that it increases the risk of other cancers for the rest of your life. I have signed off on these side effects. I’ve also given my informed consent that my kidneys, lungs, and heart might fail. I knowingly took medications that have caused me to lose feeling in both my hands and my feet.
“Well, the feds are going to start labeling the bags in the future. It’s dangerous.”
“I don’t give a f***,” my mind screamed.
I’m so sick I want to cry as it is and now this woman is raining on my parade, knocking on the only food I can eat, and suggesting, WHAT?!
I hope she is not suggest that I a. caused my cancer b. contribute to its reoccurrences c. am knowingly putting myself at risk (beyond the risks of leukemias, breast cancer, thyroid cancer, and MDS that I have accepted as known side effects of my chemotherapy) or D. am asking to suffer more.
What the hell is that woman thinking? NEVER EVER make this error in decorum. I was too sick to fight. I could only lay in bed defeated.
I put the bag of chips away, deciding to go on starving and dropping pounds, so I didn’t have to face lectures from this woman.
She didn’t even offer to get me something to eat as an alternative!!!
I told her I was not concerned over potato chips, I’ve done the best I can to fight my disease with the knowledge I have.
It is an insult, a complete slap in the face, to have tried every treatment possible from NH to NY to MA to Germany and not improve anything. It hurts my ego. I already feel powerless and completely out of control of my own body.
To hear a comment suggesting I had some control over my disease, when I’ve only recently come to terms that I may not, from an ignorant Nurse, required to care for me, who has no idea what I’ve been through and how hard I’ve fought to be alive today, makes me so angry it brings tears to my eyes.
I wasn’t going to give her the satisfaction of my reaction. I told her I had a website chronicling my fight. I handed her my card. I asked that she read “I live next to Clarenoble.”
People, please don’t give advice without all the information. I don’t need “holier-than-thou” lectures. Do not suggest I am not fighting hard enough. ABSOLUTELY never suggest that maybe I’m down right harming myself (unless I obviously am self destructive, but that’s different, and I’m not).
I do need help. I do like constructive criticism. I am willing to try anything to be rid of my disease.
I do the best I can with the information I have and the situation I’ve been given.
Please, think before you speak, and do not make the same mistake this woman did.

Update From the Parents (Nov. 20)

Nancy and Vic St.Pierre wrote (NOV 20, 2008):
Hi to all
Wow have we had our excitement this week. I am happy to be celebrating another birthday!! The alternatives don't look like much fun. I am twice as old as Heather and Hillary. If I look at it this way it makes me feel younger. They both hope they are as good looking when they get to this age!! Ha ha
Well I have got a good story now that it's over. Yesterday Hillary had to make an unexpected trip to Dartmouth. She said it was just for a buff and a shine. Well, it was Allissa to the rescue to watch Xander. Xander has strep throat and ear infections and has been home. Alissa, son,Logan and Xander are good buddies. They have lots of energy. They were outside playing and all of a sudden they could not be found!
Panic!! She looked for a while but then started to call people to help. It's hunting season and we have a lot of deer around. Well by the time I heard about it there was about 10 people looking, plus the town police and the state police dogs were on the way!! Well Jen, One of Xanders other sitters checked again at some of the other neighbors. She found them on the neighbors trampoline. They had actually gone into one of the neighbors houses because they had cool toys!!. The neighbors were not home. It's common in North Charlestown to leave your door unlocked. So they were just playing out of site. Our Police chief had a heart to heart talk with the boys. He was great. I don't think they will dare walk off again without asking. After he left I noticed Allissa's hair turning Gray right in front of my eyes. I think she aged 10 years in 10 minutes. Now for the rest of the story....
Alissa tried to call Jon's cell phone and got Hillary who was at Dartmouth. She had been very medicated. Hillary's comment to Allissa was " that happens sometime, they will be back." That’s how good the drugs are. She wasn't very reassuring to Alissa.
Well as always I try to start off with the good news. That horror show was actually the good news. Hillary is now at Dana Farber. She has pneumonia. She is getting antibiotics by IV. Her lungs have been shedding old cells. The last 2 weeks she has been sugar coating her Blog. On Monday Dana Farber did a cat scan. Hillary had another node on the neck. Thank God it was just scaring tissue from one of the many biopsy's. She did not mention that in her blog. Also on Monday she talked with Dr A. He told her that the symptoms she had now- Vomiting, diarrhea flu like symptoms, bone aching pain are very common. These symptoms could stay with her for a year or more. I think that really hurt her emotionally as she thought this would go away quicker. I think it took a little fight out of her. Right now she is very sick with a virus. She doesn't have much of an immune system. She has lost a lot of weight. She gets extremely tired. She is not the same Hillary we have seen before. All we can do is hope she can fight through this. In the immortal words of A wise coach I know, (He must be related to Yogi Berra) beating them is 80% mental , 40% physical and 20% luck. I would add some more percentage for prayer, support , medicine and training but we already are more than 100%.
Hillary is still doing her blog. She has now made business cards with her blog address to share with people with Cancer. She thought she would give them to a few people she talked with at the hospitals, Secretaries, nurses, a few patience etc. She was talking to an admitting secretary about how she was putting all of her bone marrow transplant information on her blog so that everyone could know what to expect. She had complete strangers listening from the waiting room ask her for her card. She gave away all her cards in 3 days At Dana Farber and Dartmouth. She has been approached by Google to do some work for them. She has a lot of people following her.
I think we are in for a tough time for a while. I know I have asked before but please keep her in your prayers. Actually I think we could all use some right now. Please check out Hillary's blog
Thank you all for caring. We could not have gotten this far without you all. Thanks Special thanks to our mystery bone marrow donor, where ever you are from.
Vic, Nancy, Patrick, Gracie, Allen, Pierce Heather, Xander, Jon, Hillary

Game Face


Cancer College

Yesterday, my temperatures decided to fluctuate with a range from 100.8 with a productive (yellow, green, with red streaks = infectious) disgusting cough to 96.6 (I have no idea what that’s about, hopefully an error).
Either way, I decided to err on the side of caution and call my NP Melissa.
Melissa decided she didn’t like what she was hearing and consulted Dr. Alyea. Dr. Alyea, playing bad cop, insisted I should come do Boston immediately.
Fifteen minutes later, I’m packed and out the door. Who can beat that record? We left at 1:48 and arrived around 4 pm.
Me, being who I am, got on the phone and notified three separate people I would be in town so they could hang out at my bedside while I’m miserable. Thanks ladies. You rock. You also make my life that much happier and easier.
I’ll be receiving fluids and an IV cephalosporin for pneumonia. I may need to be increased to vancomycin depending on the effectiveness. I had blood cultures drawn first, of course, and a nasal lavage.
I don’t care that is has lavage in the name and sounds nice. I put my head back, one person puts saline up one nostril and another sucks it out the other side. It’s uncomfortable.
I finally made it to my bed on 4c about 7 pm to get myself cozy. What an adventure.
I’ve been trying to prevent or fight off pneumonia from the day of transplant. I’ve taken Mepron, Bactrim, Levaquin, and when those failed, I’m not taking IV Ceft something, with the possibility of vanco in my future.
See I'm learning a lot. I have the exact process that should be undertaken with a patient like me memorized. Let's think of this like cancer college.
I’m blessed, this was caught early. It is a manageable side effect. Early detection was priceless and fast action on the part of the hospital is fabulous.
I’ll hopefully be out of here in 48 hours.
Keep Saying those prayers for me.

I almost Incited a Riot

"As human beings, our greatness lies not so much in being able to remake the world - that is the myth of the atomic age - as in being able to remake ourselves. -mohandas gandhi"
I almost incited a riot yesterday waiting for my labs at DHMC.
Sometimes, when I get in a special mood, I do have concerns I will incite mass action.
I’ve made “Baldie’s Blog” business cards. I love them. I feel so professional.
Fake it until you make it, right?
I was sitting, waiting, in Norris Cotton’s lobby, talking to several other women in the same position as me.
We were telling funny stories. We were sick and silly.
As we started to disband, I told them about my blog and handed out the remaining cards I had.
Things changed after they read the title and my announcement “Real Women are Bald.” The rowdy group of woman I was talking to started jumping out of their seats. They started smiling.
THEN…They started whipping their hats and wigs off. One was waving it around in the air!
She told me, with attitude,“I only wear this because my head gets cold.”
YES! You rock it girl, and congratulations, yesterday was her final day of chemotherapy!
It felt like a scene in a movie. Despite how sick I was, I don’t think life can get much better.
I am having a problem deciding which graphic should represent my “professional” or “cancerlebrity” (my favorite word today) image. Please comment if you feel the cancer sucks icon or the silhouette is more appropriate.

Thursday, November 20, 2008

Heading to Boston

I'm going to Dana Farber right now to be admitted for some IV antibiotics for pneumonia. It's my Dad's Birthday. I didn't get a chance to see him. I'll update you later.

Yesterday AM

How To Reach Your Provider

Being a patient for so long, I may have forgotten some of the basics difficulties we face in locating care.
After three years, I still question when I should call my doctor. I think “Is my question stupid? Do I sound like an idiot? Am I wasting their time?”
I don’t know what I’m scared of. I don’t think I’ll be hollered at for being an idiot and sent to the back of the short bus.
I stomp on these thoughts. I beat them out of my head.
I flip the script and think “Without our illness, these people would be out of a job. They are paid to talk to me, if only to alleviate my fears.” Try to remember this, or anything that makes it easier, if you find yourself in the same position.
I am looking out for me. If I am scared in anyway, I’m going to make the call and not give a damn what anybody thinks.
You should all do the same. BE STRONG and TRUST YOUR GUT. There’s a whole, very persuasive book, proving first instincts are usually right. It’s called BLINK, by Malcolm Gladwell, one of my favorite authors.
We’re going to go back to the basics today.
I’m going to answer: How do you get a hold of your provider?
All patients are given guidelines for when to call: fevers above 100.5, diarrhea, vomiting, rashes, etc.
These symptoms are concrete, but sometimes my symptoms don’t fit the “call” problems.
Sometimes, I just “don’t feel right.” My gut says “something is wrong and about to go very badly.”
YES, call your provider with bad feelings. They will not laugh at you. You know your body best.
Know the process of getting a hold of them in advance! This will make it easier when you are sick and not thinking clearly. Write the process down and post it on diagnosis!!
At DF, the most effective way is to reach a provider is to have them paged. I have the page number memorized (617-632-3352). This is the only number I have to know.
I tell operators both my doctor and practitioner. They can work it out who calls you back. Now, you’re on both their radar. Two minds are better than one.
To speak with them immediately, ask to hold and be patched through. If your call is not returned in twenty minutes, call again.
At DHMC, the most effective way to reach a provider is through their secretaries. If you can only remember one number, call the general number (603-650-5000), then ask the operator for the office of X.
Secretaries are an often overlooked Godsend. DO NOT DISRESPECT THEM. Be nice. They’re the glue holding the office together.
My phone calls go like this, “Hi. This is Hillary St.Pierre. I am a patient of Dr. X/Pr. Y. I’d like to (speak with them or schedule an appointment). I just received (insert procedure, surgery, chemotherapy) on (Date) or (how long ago it was). “
“I’m feeling (fill in the blank) and would really like to (…be seen, speak with them, etc.)”
If you are asked “Can you hold?” and feel you are too sick to do this, and need immediate attention, SAY NO. That’s why they’re asking the question.
It is beneficial for everybody if you call knowing your symptoms and what you want. All that will then be needed is a yes or no and some action.
REMEMBER, your providers can’t see you! They are not up in your body with you! Describe the best you can what you’re feeling, but if you’re uncomfortable with their response, ask for an appointment.
It is ALWAYS better to err on the side of caution. Too many things could go wrong.
On somedays, if I’m concerned about hearing a response, I’ll try to get ahold of everybody.
Yes, I call, page, fax, or email all six providers who currently work my case: Dr. Alyea and Melissa, Dr. Gautier and Anna, Dr. Meehan and Beth.
I’m concerned I’m in provider limbo and don’t want to fall through the cracks. By doing this, I ensure at least ONE opinion, and all involved in my case are updated on my concerns.
This has been effective for me. My complaints are legitimate.
If you’re frustrated with a lack of response and start calling so much you think you are being shameless, you’re headed in the right direction. I get into PUSHY mode without being BITCHY. Don’t cross the line.
If I’m concerned I’m not getting the care I need, I’ll start to pout or cry. I never yell or scream.
In my experiences, providers are GREAT at returning calls, pages, emails, etc. This information is for JUST IN CASE.
It’s always best to have a plan B-Z.