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, August 28, 2011

The Opportunity in Loss

Before I had cancer I cringed when the dog brought in sand from outside. My husband and I argued about whether the silverware should be put face up of face down in the dishwasher. Our house was never clean enough even though I'd spend at least 8 hours "perfecting" it. I'd scold my son when he got excited and ran full force at me for a hug. I'd complain about imagined slights and forget about friends in need of support. I didn't even know how to be supportive. I was so afraid of failing, I barely tried.

I believed in the "if I only had" myth.

If I only had my bedroom painted, the second floor finished, a garage, and a new car I'd be happy.
Or
If only my son would only behave and my husband made more money then I'd be happy. These thoughts lead me to think if I only worked 48-60 hours a week I could make $5000 a month, and then, everything would be perfect.
Any of this sounding familiar? Were you wondering why you weren't perfectly happy too?
When I got cancer, all those ideas crumbled and fell like sand between my fingertips. I'd never experienced such as loss.
I lost my job and our financial stability. My lifelong idea that money could buy a comfortable lifestyle was shattered. My idea that if my house, career, and family were perfect life would be perfect too was  defunct.
I was striped of the foundation of ideas I had about life overnight, only to be left with the clarity to see how I was living was fundamentally different than how I wanted to live.
 I realized I'd open doors, give compliments, and wide smiles to strangers while snapping at the ones' loved most for misspeaking a word or misplacing an item.
I was surprised how sure I was of the life I wanted, and how with all the assets I had, I couldn't obtain  that ideal. I needed clarity, and I found it like most of us do, through loss, by living forwards and understanding backwards.
After cancer (AC), when I didn't feel happy, I'd look back in retrospect with my 20/20 hindsight and think of how I could improve to have the life I wanted next time. I replaced  distractions with reflections.
From losing everything, by my cancer but maybe through your foreclosure, lay-off, divorce, or other catastrophe, having anything felt like winning the lottery.
I was like a child again, excited over every little occurrence like I'd never experienced it before.
I loved that my dog could open the door herself with her muddy feet to check on me.
My husband and I would debate about cheesy comedy vs. science fiction while snuggling on the couch.
I'd open my arms wide when my son would charge full force at me like a football player wanting a hug.
I stopped assuming the worst if my friend forgot to call and started loving them openly and honestly, free from judgements.
The "if I only had" myth turned to the "if I was only healthy" montage. The stability I longed for was not financial. It wasn't anything concrete that could be gifted in this world. I longed for a daily routine and family dinners, not the largest, well groomed home in the neighborhood and the highest income. My concerns of the past didn't even register on worry my radar anymore.
Crisis, cancer, whatever, changes everything, but it doesn't have to change everything for the worst. Even when losing everything, we never lose our free will, our ability to choose, and that includes the choice to focus on happiness.
 Obstacles offer opportunities to grow. Crises allows us to practice our resilience, re-evaluate what is and isn't working in our lives, to emerge happier and smarter.

 Cancer gave me the clarity to see that the life I could still live even if I was poor and ill. I discovered I was bigger than my body, my bank account, clothing or career. Crisis had set me free from my personal measuring stick telling me I had to constantly be perfect. By disowning my own expectations, I was set free to live a life of limitless love and success. All I had to do was lose everything to understand I all ready had it all and didn't even know it. 

Saturday, August 27, 2011

I hear my bed calling


I love hearing myself say, "but I'm really not THAT sick," when I'm surrounded by a group of health practitioners, seasoned RNs, Nurse Practitioners, medical students or doctors at various stages in their careers that obviously disagree with me. 

It is when I'm making the aforementioned statement, At that moment, I know I'll be getting more treatment whether I like it, want it, or not.

For example today, I've been battling an upper respiratory infection since my kidney stent was placed 2 weeks ago. 

I took 7 days of 500 mg levaquin to kick its ass out. It didn't work. 

The fluids mon. They helped until Thurs but by Thurs. I'd officially overdone myself with school, soccer, playing. I thought I just needed some fluids to keep my BP up. 

Well, That wasn't the consensus. The nurses (well, and me too) were concerned about my frequent frothy cough with yellow rattling sputum. My lungs still had wheezes and rhonchi after my nebulizer, inhaler, and prophylactic (just in case) zithromax. 

I knew I should have demanded a chest xray mon or any other day I called complaining, but it just didn't happen. 

Now, it's Fri. I had plans to scamper to Mass for little nephew P's 4th bday party at 11am, and those plans are being threatened. 

I'm getting a cxr at 1:30 and seeing a doctor at 2pm. Now the earliest we could leave is 3pm to get there by 6pm. 

Hmmm. I think todays plans have been cancered. 


Maybe a roadtrip tomorrow? Hhhmmmm, or throw in the towel and sleep the weekend again? We'll see. Now, I hear my bed calling. 

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!

Vic's on a roll: Birthday Update

Hi too all
I woke up suddenly tonight at 3:46 AM. I remember this well as 29 years ago I was awaken at the same time because Nancy's water had broken and we were going to have twins!  It is a day I will always remember.At 9:15 Heather was born. No complications, everything was going great. then Hillary decided that there was plenty of room now that her sister was gone and just wanted to hang out a while. 31 minutes later, what seemed to be a lifetime, Hillary was born. Yes she had a few issues. The nurses and the 4 doctors that worked on Hillary all remember that day. Dr West, who is a great friend till this day, calls me every year. She was his toughest birth by far. 
Hillary's apguard score were 0,1. Kind of like a computer code! 0 is no breathing or heartbeat taken at birth. 1 is for breathing on a respirator at 5 minutes. She had a crushed skull from the high forceps. We were told she was a 1-1,000,000 birth with a prolapsed cord. That evening I can still see the look on Dr West's face as he told us "not expect much from Hillary." Brain damage was expected. She was transferred to Dartmouth- a place now that she visits a lot!
Needless to say she fooled everyone.!! Not only did she recover, she excelled. She has had a will to live right from the 1st day. She was born with it. We could only nurture it. 
We continue on our wild ride to this day. Hillary had a 2nd opinion on thursday last week In New York City. If you know Hillary by Now she was going to make an event out of it. Wednesday is free day at the Bronx Zoo. Jon Xander and Hillary had to go visit the tigers. Then she contacts her friends from college of New Rochelle. 6 women, most with kids, drop everything to come to visit Hillary for dinner at the hotel. I call it the meeting of the UN as they are all different nationalities from different areas of the city. She always get positive energy from these friends.
 Hillary got another opinion from a research specialist at New York University. Dr Oconner is doing trials for a drug- not chemo- that has been 75% successful in curing Hodgkin patients that have not been helped from chemo. A new trial opened at noon on Thursday. Hillary's appointment was at 1:30. She got into the study! Yes we have new found hope!!! We always thought that if she could fight long enough that research would come up with something new. Nancy and Hillary are headed back for her 1st treatment on Thursday- Our anniversary.
Last friday Hillary needed day surgery to put the stent  back into the kidney. The Cancer is growing so fast that it is already shutting off the connections. they placed a metal stent instead of plastic because of the tumor growth. She has rested and slept most of the last few days. She has to save what energy she can so she can make another trip to NY and keep fighting. The  drug has not been toxic to any of the others in the 1st trial. It shows improvement in about 3 weeks. Chemo had been almost immediate in the other 12 times that the cancer had come back. I hate the fact that this is #13. But that is Heathers favorite number so I think their bond is stronger than my superstition. 
So we have new hope. We cling to the fact that she has been a fighter all her life. we especially cling to the help, prayers and support that are friends and family have given to us. Our emotions are being held together with string and love from all of you. We thank you very much

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

Crunch Time


I knew I shouldn't have gone out this am. I was still recovering. My head ached. I was peeing every 10 min. I wanted to fall asleep. 

My chest kept rattling with phlegm, a little souvenir from my intubation fri. It's now monday. You'd think my mind would have recovered. It hasn't. 

With age, multiple surgeries and illness suseptability increases. I'm trying to raise the yellow mucus out of my chest while not vomiting and keeping my eyes open.

 So why would I think I could drive?!  Because meds do that to. You feel capable, a little cocky. You know you're sick, you know you feel awful but add a naggy unhappy 8 year old who wants to hang out with his "best cousin" and won't shut up mentioning it until it happens, you don't know what your capable of.
X even told me not to fall asleep driving before we left, but THAT wasn't going to have to happen.

What was going to happen?

My head was going to pop. I was losing control. Too much sensory information. 

I turned onto Pearl St., where I'd been directed to go, but it was actually Prospect st. I called the babysitter who gave me some more directions and the exact address and description which should have been enough. 

I knew I was in a tizzy, but driving safely with my son. I wasn't speeding. I wasn't doing anything "crazy" except talking on the cell phone trying to get directions not completely paying attention. Yes, I was a total fault for not stopping.

But that one misstep of going to a weird "p" st. sent me onto a bad path. I was on the phone with the babysitter driving straight like I thought I should go when I heard "turn around". 

Exasperated, frustrated, I put the car in reverse seeing the smooth driveway on the right never seeing the ditch on the left. Crunch!! Half my car went over a 3ft brick wall, the other has fine, safely on the driveway.

 I was frustrated. How can I fix a car now? I sobbed in my head.

 I never lost my cool, But i did get tearful. 

I'm lucky to have such strong helpful men who make sure I get through the day. J and Dad came to my rescue faster than AAA could have. C and X were all ready to do it themselves enlisting the help of neighbors. I had to tell them we were fine.

 They lifted my car up. I drove it slowly back onto the rode. My dad took it from there, driving x, c, and me safely home for lunch!! 

A near crisis averted, again. I think my car is safe, no damage done.

No man stands so tall as when they stoop to help a child. - Ab Lincoln. 

Tuesday, August 16, 2011

Reminiscing: I was a Princess (Really)


Growing up, you may believe this or not if you knew me, I wanted the "princess life." I wanted the whole idea. I wanted to live in a castle with nice jewelry and loving people who helped care for me.

I have no idea how this jumped on to my "To do" list, right next to go to College in NYC. I was independent. I had goals of being a successful independent NY career woman, but I didn't see why I could have both?

Those two items severely limited where I could go to school. I  wanted a castle in NYC. 

Who would have guessed? Just like everything in my young life, I got what I wanted. It wasn't an exact fit.

The College of New Rochelle was an "All Girl's School" that didn't allow male visitors over night.

Eck.

It also wasn't in The City or near a subway station.

Instead it was in Westchester and close to Buses to the Bronx or the Metro North Train to Grand Central.

I didn't mind learning with All Girls. I had a huge grassy campus with trees.

What I wasn't excited about was the strict Catholic Rules that students still had to abide by, especially curfews with men in the building, but that didn't matter since I was with J, I had my Prince Charming, and the campus was filled with castles. Even the new buildings were built to mimic the 100 year old ones that were there before.

They were all decorated in an old- wealth victorian style full of velvet, stained glass, hand carvings. 

OF course, that wasn't the only thing that made me a princess during college. Ingredient numero uno was Prince Charming, and though I didn't know it at the time, though I made him work hard, I had my Prince Charming taking care of me.

 Last week, Going to NYC, we left a day early to New Rochelle, the suburb of NYC where I went to college. 

It took me back for the years BC, before cancer, when we were a young couple healthy, in love with all our hopes and dreams in front of us.

 We were going to conquer the world.

We don't reminisce about our hey day often, but I vividly recall being treated like a princess. How did I get the Princess treatment from J?

Valentine's day freshman year made every girl on campus jealous of me when J sent me a dozen roses of all different colors every hour on the hour for six hours!! 

There were so many my room mate would claim them when I was out. The floor smelled like a floral shop. I was the envy of all girls at my all girls school. Even the hotshot, senior sorority leader who only got one blue rose. I was even tracked down for delivery in chemistry class. I don't know how he worked it out.

 As if the one gesture wasn't big enough, J'd visit me for the weekend every 3 weeks, and we'd go out in the city doing whatever, whenever we wanted to, because we were young and free on the verge of fabulous high paying careers.

 He took care of my cell phone and gave me a credit card "just in case," even though I was fortunate to have supportive parents who were paying my tuition, food, gas, insurance, costs, etc. I wanted to make supporting me as easy as possible for everyone.

Being taken care of by J and my parents, I was such a lucky young woman. 

We had worries. X came earlier than planned. J changed his work schedule, lived between our parents houses while I commuted. We both new it would be worth it. 

The plan was for me to graduate, possibly finish a master's degree to be a nurse practitioner, then J could go to college full time if he wanted to. 

J and the parents had our house was built and ready to move into when I graduated. I didn't have to worry at all about the building. All I had to do was approve the layout.

We thought we had all angles covered, every problem solved. 

I was going to work as an RN for one or two years according to the guidelines of most mater's nursing programs. 

J decided to go to school part time and enjoy it. Things were settling down. I was given some of the best years ever then!

It was great remembering with J and having the blanks filled in by friends this past week.

It's hard to go back there, because we all know where the story veers off a cliff. I remember taking a sigh of relief and thinking, before I got sick, what's going to happen now?

We'd gotten past a huge obstacle and were finally looking toward the good days we'd busted our asses for.

I'm lucky I had my Prince Charming for the good times, but I'm even luckier to have had him to support me through our never ending hard times. I know I'm among a lucky few that gets to have a truly committed relationship. I can only thank Jon for that.

Happy Birthday J