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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Saturday, August 27, 2011

Are you Safe? Prepare Yourself and Your Car for the worst


Natural disasters can strike at any time, like this weekend, but life will be easier, if not saved, by making sure you have these items in your car to keep you safe.
With Hurricane Irene bearing down on the East Coast and many Americans trying to evacuate the area in their vehicles, there is a very real threat for people of winding up on their own or even stranded in their vehicle, which becomes a kind of lifeboat.

But what is in that lifeboat to help an individual or a family cope with adverse conditions? Too few drivers keep basic tools and other necessities and helpers to endure a night or more alone in a car, or the basics to get a damaged car back on the road.

There are a few small things you can carry to make life on the road easier. If you're going to be on the road every day, these items will prove themselves useful in the long haulFit as many into one carrying case as you can unless the vehicle has cleverly designed stow-away slots for specific items.

First-aid kit: It's an obvious one, but how many drivers actually carry a first-aid kit? In the critical minutes before emergency care arrives, you could give an accident victim the care they need. Many luxury vehicles come with well-equipped kits, so check before you buy.

Blanket: This one goes hand-in-hand with the first-aid kit. A victim at an accident scene may need to be kept warm to prevent shock. And if you're broken down in unexpected weather, the blanket may keep you warm when your vehicle cannot.

Spare tire and jack: A well-maintained spare tire and jack can mean the difference between a fifteen-minute inconvenience and an hour-long, $75 ordeal. While other drivers are waiting to be towed to the near tire depot, you can change your own and roll for more than fifty miles to the shop of your choice. Make sure to check the condition of your spare each month or so. If you often travel in remote areas, replace a "temporary" spare with a real fifth tire that fits the vehicle.

Water and food: This is a no-brainer, right? A few bottles of water and shelf-stable or vacuum packed snacks. Don't buy snacks that will be compromised in a hot car. And change them at least twice a year.
Spare wiper blades: This may seem like overkill, but it's not. Foul weather can wear down wiper blades more quickly than you think -- especially in wintry climates with snowy, salted roads. Keep them on hand and change when the windshield gets bleary. Most blades can be refilled in less than a minute; the replacements are available, usually for less than $5, at local car-parts stores or from your dealer.

Jumper cables: You can always find another driver to give you a jump-start - but can you always find a set of cables? A good set of cables costs less than $20, and offers instructions on how to jump your car if you're not sure. Most major department stores, such as Kmart and Target, stock these in addition to the car-parts stores.

Sharpie and paper: In the event you have to leave your vehicle, you want to be able to leave a note.

A socket-style screwdriver with driver and multiple "bits" in various Phillips and standard-style sizes: This tool is far more versatile than a regular screwdriver because you can pick the bit type and size that exactly fits the fastener you're trying to remove. Some kits come with a small selection of sockets and drivers for those Torx (star-shaped head) screws that are increasingly commonplace. It's an essential tool to have and keep with you in the car.

A roll of duct tape or electrical tape: Duct tape has been the emergency mechanic's best friend for years; with it, you can temporarily bind a leaking radiator hose or quickly patch up shattered glass. Electrical tape is great to have on hand when you need to keep an exposed electrical connection from touching something it shouldn't. Toss a roll of each into your tool kit.

A pair of medium-size vise-grip pliers: These can be used to remove things or hold them together in an emergency. Vise-grip pliers can temporarily hold up an exhaust system that's about to fall off. They're also great for working out bolts (or screws, etc.) that have been rounded off or stripped. They can be used in lieu of a bulky socket set because they'll fit almost any bolt and have the grip strength to remove most fasteners. Get two so you can use one to keep a locknut from turning with the bolt you're trying to remove.

Pen magnet: This handy tool can help you dig out keys that fell between the seats, or retrieve a tiny screw you dropped someplace inaccessible to your hand. Get the telescoping type that looks and functions just like a radio antenna. There are also flexible models that can be bent to work around obstacles. Both are great to have in certain circumstances where almost nothing else will do.

Pry bar: If you've ever been in a minor fender-bender where the fender rubs the tire, you'll know the value of a pry bar. It can turn an otherwise inoperable car into one you can get home, and save you some bucks on towing charges.

Mini-compressor: You can buy a small, hand-held air compressor that runs off the car's cigarette lighter/power point for less than $30. These compact, lightweight units can be a godsend if you find a tire is low on air and can't find a gas station with an air pump. They're also great for inflating kids' toys and air mattresses. Get one that has a built-in emergency flashlight.

Emergency cell phone: If you are one of the few who don't have a regular cellphones, invest in an emergency-use cell phone that tucks away in the glove box. These phone are inexpensive (the plans call for a very limited number of calls per month or even just 911) but can be lifesavers if you have or witness a serious accident. You can also use them to report possible drunk drivers and other emergency situations.

Flashlight, disposable lighter and Flares: The flashlight and lighter are self-explanatory. Flares can be used to signal for help, mark off your car from oncoming traffic and even work as emergency lighting

Friday, August 26, 2011

First Day Jitters





Outside St.Mary's
X, first day of Pre-K
X started school today (or Weds., I've been busy. (Tear).
X is in third grade. It's bitter sweet. 
My chance of seeing him go to pre-school was almost crushed by respiratory failure from my cancer. Instead, I'm hear for his 1st day of third grade. 
Just surviving to see it is an accomplishment, but how could I not fight like both his and my life depended on it?
I am so lucky and happy seeing him grow, even if he is halfway through elementary school now (another tear), and he's beginning his "I hate school" tantrums all ready.
Why, the fit?  
X reminded me I didn't take him to school early (like yesterday) so he could check out his class and see who he was sitting next to. He likes to be prepared and we've done this every year since kindergarten.
Oops. There goes mother of the year award, again. 
I thought having some of my friends (and his first and second grade teacher) for lunch the day before would be enough, but really, hey were just there to hang out with me :)
X did have some new clothes, which made the transition easier.
 His new shoes, the next size up but changing from Nikes to Adidas, were too big so he was good with his shirt and backpack plus all the journals, pencils, erasers, etc. that we organized the night before.
 This didn't stop him from being nervous.
Fortunately, he did grab a friend right out of the car. I'm not worried about Mr. Social. 
I'm just a proud mom I get to see it! 
And he has his second practice for U-8 travel soccer tonight! 
Yay. I'm getting to see him grow.

Thursday, August 25, 2011

Passing Out Vaso-Vagal Style


I've been passing out. 

As if the nausea and vomiting with bowel issues wasn't enough, the medications I took to combat all these problems, coupled with dehydration, sent my blood pressure plummeting and me along with it. 

Who knows where my normal 90/50 BP (normal is 120/80) dropped to. Maybe 50/30? 

I had my mother holding my elbow everywhere we walked. 

Laurette, probably looking like my partner the way she was so tenderly letting me lean on her and dragging me at the same time, helped when she came to visit. 

But not matter what, the whooziness didn't stop. I couldn't find which way was up so what to do? 

I tried to sleep it off, but when I woke up in the middle of the night to pee, I stood and dropped, groaning. 

Then I did it again, with a thud, then another drop. By this time j had woken up and was carrying me, concerned, to the bathroom. 

There I sat there, confused whether I should poop or not because  the parasympathetic nervous system (vagal) response can be stimulated and drop my BP even more. 



Who knew pooping was a life or death decision. I just kept picturing Elvis who died ass up after vaso-vagaling and dropping his heart rate and BP from excessive prescription drug use.  





 






I didn't want to go out like that.

I decided to call the clinic Mon. to get fluids with steroids and kytril to stop the vomiting. Neither is known to drop BP like ativan or cesamet. 

Thankfully, fluids and steroids was what my body wanted. Now I'm getting better, but after just one chaotic day (it's Thurs. and yesterday was the first day of school), I'm back to feeling a little nauseas, but I'm still eating.

Tuesday, August 23, 2011

Patient Escape in NYC


 It’s not fair.
Life is totally unequivocally unfair and I'm at the epi-center of an abyss of unfairness. 
My treatment at NYU last Thurs. fell together perfectly. We made plans to drive to the Affinia Shellbourne Hotel Weds., as arranged by Dr. O’Conor’s team, who I love.
We get there for a fun fine evening when @ 60 st. on the FDR our tire goes flat. We easily get waved to the side where magically there is a break down inlet so we don’t block traffic.
 We’re flagged over by a group of men in their late 20s who proceed to hop out and start fixing our tire like a road crew for the Indie 500. I kept cheering and singing the “Pep Boys” song in the back (you know the commercial.
 We were on our way to the Affinia in 20 min and only -$40.
We thought we’d dodged a bullet, but no, not me, not Murphy.
At the hotel their front parking spot magically opened up, and we snagged it knowing the donut still needed to be changed.
That was one hell of a fiasco.
Come to find out: AAA does not do tires.
I thought tires were their thing, but it’s not. According to several AAA agencies, changing on tire to another or a donut using what you have is all they do.
They offer Nothing Beyond That. They will not patch a tire. They won't bring a can of fix-a-flat to fill the obvious puncture caused by a nail. They won’t put a resealed tire back on the car and let you ride it around the block to be assured.
 Hard lesson learned: stick to your dealer’s insurance. AAA offers little but discounts.
 The subaru insurance connected us with a mechanic who came to our car, put the new tire on right in our parking spot (or so we thought).
We went on our unmerry way, our wallet $305 lighter, a reasonable cost for a brand new tire changed in a NYC parking spot.
 But ruining the bonding evening I had planned with my mom wasn’t enough, we were bamboozled, taken advantage of, Rumplestilskin plugged our tire and put it back on ($30 job) for $305. There was no new tire involved.
Ouch, not to dwell.
 But I cried. I cried for the lost good time my mom and I would have, another memory gone to pain where there should have been happiness. I cried to grieve that these times may become fewer and fewer and I’d missed it.
 
People do not understand what it’s like to lose moments when your life is threatened with ending anytime.
I'd wanted a mom-daughter bonding night in the city, and our precious time was monopolized by this.
We did make it out the following day. I was nauseas, could barely eat, and throwing up, but what’s new. We went to a dinner down the block where I chocked down hash fries easily before we jaunted off for retail therapy, to Canal St. first of course.
Good thing I had mom, all those judgement impairing meds and me with cash in my hand in Chinatown is dangerous. I know my husband was scared. I had been storing money for this trip, but not to shop, to cover parking ($150), the hotel, meals, travel, etc. However, I also had mom to help. I’m so lucky with my parents.

Now, in shopping heaven, mom is chasing me, hands full of trash bags from items my shopping bonanza trying to chase me on steroids like a women let free in a candy shop. All she wanted to do was make sure I didn’t fall in my frenzy, start throwing up all over the place, and not make obscene purchases.
I had two bags I’d been wanting to buy. Then I had two shirts for X and C. I picked up a box of pokemon cards for X to share and a Qatar FBC Jersey. I’d also made a purchase for Lex as back-to-school gift.
Good thing I had mom for style sense too.
 I had an oversize orange part leather/ part orange/ white canvas tote, and I was not afraid of buying it when she came through with a shoppervention.
I don't know WHY I decided I liked it, but most of all I don’t know how I was so sure J would love it too.
 If I had stopped to envision him with me talking in that store he would have said he didn't even like me in the store, he didn't want me in the whole neighborhood because he knows the crazy fun I have there. There was no way he’d be hopping up and down for some random ugly orange purse I don't need, no matter who it was by, even if it was Micheal Kors.

I got my retail therapy out before heading to real therapy, where I was high as a kite. Thank goodness EVERYBODY from door to infusion was perfect and helpful.

 Infusion therapy was as anti-climactic. It was done in an hour. I was still able to do dinner with a bestie, Laurette, even though I had medicated myself so heavily for being sick and throwing up all ready I couldn’t walk. I kept dropping my blood pressure, almost passing out.

I had to be carried places, but thanks to kytril and dexamethasone I wasn’t throwing up anymore. I was asleep by 9:30, but out the next day for breakfast and Union Square.

I’d never taken mom to Union Square before and it was time. Any place with two five story shoe stores side by side that are fun and affordable is a place she need to be. We also had to make an emergency baby shower present for Vince and Killy, a shower I had tried to help plan, but ducked out with the whole illness thing.

I also got to swing by and see my friend’s Chris and Yanellie’s home in Westchester. They’re my partner’s in crime with the “Z and The Cancer Meanie” book. It wouldn’t have been done without them.
Finally though, the ultimate best was seeing Bekah, http://truebeautyneverhurries.blogspot.com/ long term hodger I follow. She’s a patient like me, along with Chris Carr
We all have a similar pattern of disease and the same goal of living the best quality life while simultaneoulsy treating our disease for the best, longest life possible.

This is a huge change in social cancer dynamics. Previous years placed cancers in the black and white of death or cure. We patients are finding a gray area that makes us happy and keeps us living.   

We look for the best clinic trials (www.clinicaltrials.gov), and adjust our lives to go to the best new technology, trying to stay two steps faster than our cancer.

We have to stay steps faster since cancer patterns show cancer comes back faster and more aggressively the more treatment/chemo/radiation it has had.

Trials fit in nicely because they may slow this progression, though its not yet studied. We’re informally testing on ourselves. I’d love to make our endeavors more formal using patientslikeme.com to set up what we’ve done for clinical trials and their effects using their monitory tools.
This would allow other patients to review true stories with real people, as well as possibly guiding other studies.
 For  now, the US is adding completely new vaccines (Dana Farber or MD Anderson) or NYU’s directed chemo warhead straight to the cell. Texas Baylor College is offering EEB+ vs. EEB- vaccine trial with a 70 percent remission rate 5 years later (but I do need to fact check this). There are also places for  hyperthermic radiation in Texas, a treatment that’s been successful in Germany for years, but who wants to leave the country.                              
This is absolutely a determined lifestyle that requires you to be healthy enough for travel and the stress that comes with it, but it’s kept the three of us alive for over 5 years now.

Z and The Cancer Meanie Trailer



Introducing: "Z and The Cancer Meanie"


Seen the Front: View Z and The Cancer Meanies' Trailer: http://www.wix.com/zandthecancermeanie/book


"Z and the Cancer Meanie," follows the young Lion Z along on his family's adventure of being diagnosed with the cancer meanie. Together, they learn about doctors, hospitals, tests and the Meanie itself. 
"Z and the Cancer Meanie" is a  great tool to educate and introduce a  conversation about the side effects of living with cancer.  To begin conversation, "Z" has open ended questions and a summary journal for our youngest fighters to talk about or write their own feelings and experiences. There is even a reference center for fighters of all ages to use on-line tools to cope, or my favorite, kill the cancer meanie itself.
            
Come and meet Z and learn more about cancer- what it is, what it does, and how to still have fun.

The first collaboration between writer Hillary St.Pierre and illustrator extradoniare Chris LoParco 
BUY AT: CreateSpace eStore: 
https://www.createspace.com/3668132.              List Price: $12.95
8" x 10" (20.32 x 25.4 cm)
Full Color Bleed on White paper
28 pages
ISBN-13: 978-1466208339 (CreateSpace-Assigned)
ISBN-10: 1466208333
BISAC: Juvenile Fiction / Health & Daily Living / Diseases
Become a Fan: 

Wednesday, August 17, 2011


Me, pondering the harder decisions in life. Dec. 2008
My body has revolted. It has ruined three perfectly good immune systems causing me years of frustration and pain. 

Now this body knows what it wants. 
It wants a change. 
It wants a whole new fresh approach. 
It wants an anti-body conjugate inhibitor with an aurostatin chemowarhead directed precisely at my cancer, no where else.
 It wants SGN- 35.
 It wants to get back to NYC.    
It wants.......  The yankees!!                
I've done a 360 in these past 5 years. Now, I am back with NYC. I moved out Aug 2004 and couldn't stay away.  
I'm back for treatment there  every 3 weeks, back in town with my friends from college, The Model UN.
 Maybe this will help me throwback and remember all the good times I had.  
It's on, today mom and I head the NYC and treatment tomorrow.
 I feel confident.   

I'm not the only one with a Birthday


This week, Social Security celebrates its 76th birthday! 
Thank you to all the Leaders who have created and protected this American institution through the generations, rewarding working American's with retirement with stability for decades.
Unfortunately, with this decades' fiscal crisis, many Congressional leaders forced Social Security onto the bargaining table unwilling to discuss raising the budget ceiling unless democratic leaders were willing to sacrifice social security.
 In exchange Republicans would consider taxing the wealthiest americans. 
     There has even been false information spread linking Social Security to the deficit. 
But they are wrong - by law, Social Security cannot add one dime to the deficit. (Want to know what DOES add to the deficit? Corporate loopholes and tax breaks for the uber-wealthy to the tune of billions of dollars!)  
Social Security lifts millions of senior citizens out of poverty every year, and provides critical assistance to disabled individuals and children.
This week, NH Citizen's Health Alliance will deliver oversized birthday cards to Rep. Guinta's and Rep. Bass's offices demanding that they oppose cuts to Social Security.
(You can also let us know when you sign if you would be willing to deliver the card on Thursday to Rep. Bass's Concord or Nashua office or to Rep. Guinta's Manchester or Dover office.)
Please sign the birthday card today and show your support for strengthening this important program.

Thank you for investing in America's future!