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, February 28, 2010

Powerlessness




I've been feeling a whole new kind of powerlessness this past weekend. . . . .
the electric kind.
Thursday nights snow/rain/ice storm came and went and took the power with it.
The electric company had been preparing, cutting back branches away from lines for weeks before in hopes of preventing last years ice storm events when people were out of power for weeks.
Maybe it worked, I have power now. It came back in full yesterday evening.
I'm sending out a big THANK YOU to the Judd's, who immediately thought of me and ran to the rescue with a generator so I could continue to use my oxygen without fear.
The Judd's are unsung heroes in my life. They also plowed our driveway the storm before and have done countless others selfless acts of kindness through out my illness. I'm fortunate to have them as friends, as I am so many others, too many to mention.
You don't realize exactly how to dependent you are on something until you do
n't have it.
Let's take electricity, I woke up Friday to J frantically calling people from his cell phone in our bed. . . . . at 5:30 am in the morning.
He wanted to know if and where power was on. He wanted to know if X had school. He wanted to know how we would find out if X had school. He wanted to wake up, chat and hold a conversation.
This to X means, it's time to wake up, chat, ho
ld a conversation, and get moving.
J is never the parent that wakes up too early.
Too me, taking into consideration we had no power, school was unlikely, and I'm feeling drugged from taking NyQuil at night because it's the best decongestant ever for my lungs, this chain of events meant go back to sleep old man winter style.
That wasn't going to happen between two riled men, I checked my cell phone and school was, indeed, canceled.
FM has a great system where they call all parents to notify them of delays and closures. It's great when the phones work. Thank goodness for cell phones.
It's now 5:45 am, and X is ready to play. He wakes up full throttle.
No lights, no computer, no tv means no rest for mom. I talked him into a bath via flashlight to buy time when I realized. . . . . . .horrified pause. . . . . no electricity meant NO COFFEE! No coffee maker, no microwave, no stove, NO, NO NO, NO.
No wake-up caffeine for my 5:30 wake-up call.
I started taking my other medications, specifically my prednisone in hopes of waking up, but X and I were still ready to go by 6:15 am.
I tried playing any of our hundred board games, but I wasn't awake. I tried sending him outside to play with the dogs, he wouldn't go. I considered pulling out art projects, but my body and mind wouldn't comply.
I couldn't get started without my electronic routine.
I had to escape to civilization.
I did talk X into go outside with the dog's for a couple minutes. He rounded up the lids from our garbage cans.
It looked like God was playing a massive game of ultimately frisbee with those lids. They landed across the yard, a football field away from where they started.
Now, I at least I have a great idea for fun this summer if we can't find our frisbees.
We were out the door and headed to my in-laws house by 7am.
Their house was like the promised land with electricity, and they could make coffee.
The day actually turned out great.
I had all ready asked my mother-in-law to babysit.
I had plans for a "princess day" with a friend of mine.
Everybody, woman, man, child, patient, healthy, needs a princess or prince day.
This is a day dedicated to you. It reminds me exactly why I continue to fight and exactly why I love life and keep hanging on y the fingernails.
Everybody also needs a friend like the one who gives me princess days.
Maybe, sacrificing the lung function, the years of my twenties, my career and independence was all worth the relationships I have gained from this experience.
Hmmmm, I said MAYBE.
I definitely did miss my writing. Especially since I am actually motivated. I do recognize my love for my computer more now, and the washed/dryer, the refridgerator, stove, etc. I actually found myself out and about yesterday appreciating the convenience of modern facilities, and by this I mean bathrooms. Who wants to squat in a hole and then not be able to wash their hands?
On that note, For me, today, please remember, you really don't know what you have until it's gone. Appreciate it

Thursday, February 25, 2010

Keep it Simple

Who would have known, with access to an entire pharmacy to ease my stuffiness and wheezing, it was nyquil that helped the most.
Yes, nyquil.
After being medicated like a rockstar for four years, sometimes I forget to get back to the basics.
A seriously strong decongestant is just what my body wanted.
I'm finally breathing again!
I can take deep breaths, in and out, without the sounds of squeeking and wheezing! Without my lungs screaming and frothing!
I have energy again.
I'm not saying I am healed from this cold, but it appears, I'm getting better. I'm on the upswing without ever sinking into the depths of pneumonia or having a hospital stay.
This is amazing.
The downside? In my dyslexic, backyard fashion, the NyQuil has woken me up.
This probably goes alongside how amphetamines slow people with attention deficit down enough to concentrate. I'm neurological unstable.
Doesn't matter, I'll take a little sleeplessness to breathe right again, and see how the medications treat me tomorrow.
I'm always hesitant to add anything to my complex regimen, including over-the-counter medications.
I hate waking up with a "hangover," which is exactly like the kind normal young adults get after a night of fun, I just get them after a night of medicating.
I can get a hang over from ading benadryl to my nightly routine or switching my ativan for ambien.
And I have to take something to sleep at night, because during the day I'm ready to fly off the roof from all the adrenaline pumping through my body from the steroids.
I'm an anxious, twitching, fidgeting mess, tapping my fingers, shaking my legs, letting out big annoyed sighs when anything dares slow my pace.
Imagine feel as anxious as you have ever felt in your entire life, your entire being is telling you to go-go-go and go fast, but you're body is stuck, unable to breathe being pushed in a wheelchair!
AAAUURRGGHHH. I can't think of many things that are more drustrating than being stuck in a body that will not comply with
I've been doing a lot of breathing techniques, but this has made it possible for X and I to conintue bonding, especially with the snow yesterday.

Wednesday, February 24, 2010

Nika.com

Nika, Lily, Mom and I are going to play outside.
My dogs and I went outside to play.
Then the dogs went in side to play.
Then they went back outside to play in the snow.
I took pictures outside in the snow.

Breaking News

Breaking news. . . . more Americans now believe Elvis is in the world alive and well than that health care reform will pass in the United States.
Obama unleashed his own views on health care reform these past couple days in hopes of reviving enthusiasm prior to tomorrow's health care summit.
He has finally pulled the insurance big guy vs. sick little guy card.
He is recommending, again, tax increases for the rich and a regulatory board to supervise insurance company practices.
As some of you may or may not know, insurance companies have enjoyed freedom from regulation through their exemption of anti-trust laws.
Anti-trust laws, according to Wikipedia, are laws that promote or maintain market competition through regulating anti-competitive conduct, such as dumping, purging, price fixing, refusing to deal, and monopolizing.
A great study researching the pros and cons of repealing 1945s McCarran Act is here: http://www.cato.org/pubs/journal/cj8n3/cj8n3-11.pdf).
This news comes right alongside my favorite new year pass time: taxes and itemizing all my previous year's health expenses.
The tally so far from my health insurance company alone is $856,000 paid to providers and over $20,000 billed directly to me (thankfully, I never saw these bills. My fragile health couldn't take the stress. They went unseen by my eyes directly to Aunt B).
These costs do not include co-payments (specialists at $25 a visit and medications up to $150 a prescription), travel (round trip to Dana Farber is 267 miles), food, hotel, lodging, parking or even the $400+ monthly we pay as a family just to have the coverage.
UGH. Even with these incurred costs, my insurance disability company purged me in May, refusing to pay the $566 monthly I was receiving for long term disability.
Reliance Standard is now claiming overpayment of this monthly amount from Oct. 2007 to May 2009.
Do the math. How can I pay that back?
I can't.
Hopefully something is coming through the political pipeline soon by way of protection for the sick and cost control all all around.
I'm getting ready to join the active treatment ranks again with my photopheresis.
Luckily, I have options for treatment centers, but I will have a new appendage attached, again.
I'm talking about some sort of venous access site for six whole months.
This was at the forefront of Dr. Alyea's mind. I've had so many central venous lines and medi-ports I've lost count, but my body certainly hasn't forgotten.
I have the scars to prove it.
A picc line is out of the question due to the length of the line internally.

Tuesday, February 23, 2010

Decisions, decisions

Life just can't make it easy for me to make decisions, can it?
The stars just can't align, options can't just be or not be available to force me in one direction or the other.
I would gladly take a divine intervention in the form of a dream or apparition saying, "Hillary, you will receive your treatment here for these reasons."
This is partly how I picked my college.
I looked for signs, and the signs pointed to New Rochelle in the form of Cross Cultural Solutions, an international volunteer agency based off of North Ave and a religious publication company that was located on Main St. Both these addresses popped up in my life during the decision making process, with in days of each other.
When I decided to switch majors from communications to nursing the answer came to me in a dream.
When I listen to these instincts everything falls into place eventually.
I have to decide where I would like to undergo my upcoming photopheresis: Dana Farber in Boston or Dartmouth Medical in Lebanon, NH with the primary pros for Dana Farber being that it is highly experienced and specialized in the treatment of GVHD and the pros for Dartmouth being location, location, location.
The negatives for each are clear too: for Boston it is location, location, location and for Dartmouth it's a young program with only 1.5 years experience.
I can't believe at one point in my life I cried in frustration over deciding which hospital to begin my career at straight out of college feeling that the wrong decision would send me down a path of catastrophe.
I even lost sleep over this!
I am now in the process of decided where I should undergo my photopheresis or ECP, but I'm not going to lose sleep anymore.
Life is too short.
I spoke with Dr. Gautier today, my DHMC go-to guru, and Dartmouth does have the capacity to provide this service.
They have a specialist with an impossible to pronounce name with an impossible to remember title that is in charge of the process called Ziggy.
I like Ziggy. I can remember that. One of my very first presents from a very first boyfriend (Michael T. in the fourth grade) was a Ziggy doll expressing his love to me on Valentine's Day.
I, in consistent Hillary-fashion, regifted the doll to my mom.
Oops, okay, I've finally confirmed what you all have been picking on me about and suspected: I regift. I have since the fourth grade, but a doll with the "L" word on it from a boy was too much for me to have at 12.
With this information, along with the information that it may be possible to start on my desired date (the beginning of March, Maybe the 8th, X's birthday) I now have some serious thinking to do.
Yesterday, I was running through all the pros of being treated in Boston.
Now, I can weigh them against the pros of being treated at Dartmouth.
The major plus point for Boston: it's years of experience in world class cancer care and familiarity with GVHD. Dartmouth's photopheresis program is relatively new, 1.5 years.
I need more information from Ziggy before comparing though.
Dr.'s and staff at DHMC are also not as familiar with GVHD; however, Dr. G has been great communicating with my practitioners in Boston so I can be treated here
as safely as possible.
We've all learned from my fall experience, and if I underwent the photopheresis procedure here (the actually weekly 3-4 hour treatments) I would still be seeing Dr. Alyea and Dr. Weinhouse in Boston for check-ups.
One major obstacle in my diagnosis with Bronchiolitis obliterans was its vague presentation. Chest X-rays and scans show infiltrates and possibly hyperinflation that are nonspecific and can easily be misconstrued for pneumonia, cancer, scarring, the list goes on and on.
Really, the key identifying factor is a hallmark squeek, which no one recognized since it's such a rare abnormality.
Now we know I actually have to see my Bean Town practitioners. Tests, scans, and notes just can not be trusted with me, not with Murphy.
We haven't determined a frequency, but I'd be willing to travel to Boston weekly or bi-weekly if need be, especially if this allowed me to continue participating in my families' life the way I want to.
Really, I'm weighing the benefit of experience vs. quality of life.
I am actually feeling kind of lucky I have options. I'm fortunate to have a team locally that will work with me, that is willing to communicate with a Doctor from a different hospital on a problem that is outside their norm.
I'm finally, kind of, sort of, feeling like everything could be okay.
Maybe, I could survive another 5, even ten, healthy years!
But I'm trying not to get ahead of myself.
Thanks for the prayers. Keep them coming. They are working.



I think it's called HOPE

It never ceases to amaze me how quickly the status quo changes in a precarious situation. One nominal alteration, an addition of a virus, a subtraction of a medication, and the whole equation is under siege, rendered useless, reminding me just how fragile life is.
My problems started over a week ago when I began to feel like I was succumbing to an upper respiratory infection.
To everybody else, all you readers, an upper respiratory infection or URI is probably sounding pretty scary.
Don't be scared. In your world, it's called getting a cold.
I start getting my colds like everyone else, from an exposure to someone who is sick, by not taking my proper precautions such as frequent hand washing and wearing a mask.
The onset is similar too.
I started with a head cold and a case of the miserables. I always get sinus infections. In fact, I have a big glob of snot in my left sinus.
I'm a permanent snot head.
I tried to rest. I tried to lay low, hide, watch tv, eat chicken soup, miso soup, and drink lots of fluids, but when I started developing a cough and then the cough started coming with spit, it was time to call the doc for some standard orders.
I received my blood cultures, chest x-ray and levaquin in hopes this URI would not cause a setback like pneumonia that would have me in the hospital and bed ridden for 6 weeks.
I continued on my merry way down to my sister's house independently only to be surprised midway through the trip by my nephew's sudden respiratory infection with fever and retractions of his own.
At that point I figured, "I'm either screwed or safe. I've been exposed. I'm taking an antibiotic. There is no going back now."
Again, I continued on my merry way until I could no longer deny the shortness of breath that was beginning to interfere with the easiest of everyday activities again, such as walking.
My lungs began to taunt me with their wheezes and squeeking. I started to use my oxygen to compensate and continue being a house wife, but I can feel the mental changes, the fatigue, the cloudiness starting to set in.
This is what happens to a person an immunocompromised person with bronchiolitis obliterans that contracts a cold, a simple, run-of-the-mill cold.
One week, I'm fine, running around, coaching basketball, the next I'm carrying my oxygen tank, huffing and puffing, and getting wheeled in a wheelchair after lectures from multiple providers telling me I am, in fact, SICK, VERY VERY SICK.
I really couldn't tell. I was busy babying my babies and trying to keep life where it was, where I want it.
At that point, reality hit, I decided it was time to call in the team. It's important that I make my decision with as clear a mind as possible, and luckily, the team called back quickly.
Yesterday's appointment actually went well.
I think they gave me a little of that emotion, I forgot what it's called, I almost didn't recognize it, I think it's HOPE.
Not that I've been entirely HOPELESS these past couple months, but I can't say I was envisioning any picture of health for my future.
My gvhd specialist at Dana Farber is agreeing with my pulmonologist and recommending ECP (extra corporeal photo-immune) or photopheresis as treatment for my GVHD.
This would entail several clinic visits for the first few weeks to remove my blood and have it processed through a cell manipulation machine where the white cells manipulated.
The Cleveland Clinic explains the process well: When your blood first enters the machine, it is mixed with an anticoagulant medicine to prevent it from clotting. Then, the cell separation machine collects the lymphocytes from your blood and mixes them with the drug 8-methoxypsoralen or UVADEX. This is a photosensitizing agent that becomes active when it is exposed to ultraviolet light. The lymphocytes and UVADEX are next exposed to ultraviolet A light inside the machine. Lastly, the lymphocytes and the rest of your blood are re-infused to you through another lumen in your catheter.

Apparently, the side effects are minimal (but I'm suspicious. I've heard this before). There could be a drop in blood pressure or the possibility of infection. I will need some sort of ACCESS, such as a central line, medi-port etc., which is now becoming a problem because I have had so many in the past.
As some of you may remember my body rejected my last mediport, refused to heal after the surgery to place it and pushed it right out of my body by deteriorating the skin.
I wouldn't want that to happen again, but that doesn't change the fact I will need venous access for 6 months.
Yes, this procedure, which takes 3-4 hours at a time will occur a minimum of once weekly for 6 full months.
We are unsure if the procedure is even offered at Dartmouth. I am also unsure that even if it is offered there if that is the route I will choose.
Convenience is an important factor; however, if I have to factor in setbacks from lack of experience or anxiety and fear on my part, the travel and expenses are worth the time.
We are talking about my lungs, life, and livelihood here.
But everyone in my life seems to have a different opinion on that one.
None of those people spent the time in the hospital this past fall begging for pain control and oxygen while simultaneously undergoing so many procedures that they'd wake up to find new incision that they could not explain.
However, those people will be the ones who are affected by my decision. They'll be the ones driving, coordinating, grocery shopping and babysitting while I'm indisposed.
Luckily, whatever the decision, I have help. We've done it before, and we can do it again, hopefully, this time, for the final, successful time.



Sunday, February 21, 2010

QuickDate

I always face Sundays with ambivalence.
It's a feeling I have had since childhood. It's part of my Catholic upbringing probably caused by the fact that I don't know exactly what offends God on the Sabbath.
I don't know the exact guidelines of what can and can not be done and what actions constitute a sin no this day. It's a very vague, gray area for me that's only gotten worse with my illness keeping me relatively reigned in.
I have reigned myself in these past couple days. I have designated myself to my house, enjoying my family.
It's not so much of an option, seeing as my cold has taken my breath away and Jon is still hobbling with a boot for his achilles.
We did venture out early yesterday (before the crowds) to Walmart which became an adventure in itself. X took charge throwing the heavy items into the cart and lugging them into the house. It's great to have an able bodied 6 year old around.
We are now prepared for the week. We even managed to get all the laundry done with the assistance of dear dad coming over to carry loads up and down stairs for us.
We've been really fortunate with all the help we receive to help us compensate for our disabilities.
Tomorrow I'm trekking down to Dana Farber to see my alpha transplant team, Dr. Alyea and Pr. Cochran.
I haven't seen this dynamic duo since Dec., and there is no guaranteeing I'll be seeing both of them tomorrow either.
I will be seeing Dr. Alyea and gaining some insight regarding how my graft vs. host disease can be treated as a whole.
My bronchiolitis obliterans is a side effect of my graft vs. host disease. My immune system does not recognize my lungs. It thinks they are foreign objects, like a bacteria or virus, and is trying to kill (obliterate) them. This manifests with wheezing, increased secretions, cough, shortness of breath, decreased oxygen saturation, and respiratory distress.
Respiratory failure or any significant lung problem has been my worst fear my entire life. I always blamed it on being intubated as a newborn. It's safe to say I'm living my worst fear. This disease is a nightmare nonpareil.
My cold has reminded me how fragile I am. These past two months have gone by so quickly. It's time to prepare for the possibility of treatments again or a severely altered lifestyle where my ability to breathe is always in question.
I want to deal with this as much as possible while I am healthy and able to make insightful decisions. I think it's important to evaluate what I will and will not tolerate as a quality of life and how I want to proceed.
The pulmonologist recommends photopharesis for my lungs alone. This is a 6 month procedure where my blood is taken out of me and run through a machine which manipulates my white blood cells and then replaces the blood.
Obviously, this is a dangerous, time consuming procedure that would be done in Boston.
It would also only treat my lungs.
My eyesight is deteriorating quickly alongside my lungs due to the GVHD. My eyes are the primary site of attack. I experience a "foreign object sensation" where I always feel like something is in my eye. They are gritty and painful to the point I can't even open them. My eyeballs slough white cells daily that appears like a junk in the corner of my eye. It doesn't hurt now with the steroids. I try to keep it in check with restasis, eye drops, and hot packs. Flax seed supplementation has done nothing to help, even after a year of taking it. Before the BO and steroids, I was set to start a trial for my eyes.
There are also mouth sores that alter my ability to eat and a nasty stabbing sensation from my salivary glands. There are also the skin changes, which I don't mind as long as they are cosmetic, but those also have the potential to turn into ulcers.
Dr. Alyea will hopefully offer up some options on how to control my GVHD as a whole. I'll then take the information and think, think, think about where we'd like to go from here.
Both my mother and Jon are going with me tomorrow, so hopefully we're having the conversation I hope we're having.
It's one of those talks that will hopefully help determine the course of our lives. I tend to have a lot of those with doctors.
Cross your fingers. Say some prayers. Wish me luck.
I'm afraid of babies.
Yes, I said it. You heard it.
Babies scare me. Babies make me fear for my life.
I first noticed this after my very first bone marrow transplant in January 2007, the very same month my niece, Zariah was born.
This has been my deep dark secret for three years now.
It's not that I didn't want to hold and love the beautiful new addition to the family. It's just there were too many possibilities of what could happen if I did.
Through the eyes of the immunocompromised, babies are little infectious germ mongers that can't be contained.
If they come near me with so much as a sniffle or that cute little baby sneeze, I cringe and pray for my life.
Snotty noses with bulb suction could appear in my worst nightmares.
Babies could rank right up there in the scare department with nosocomial infections , gas station bathrooms, doomsday and necrotizing fasciitis (even if you don't know what some of these are, they just sound scary, don't they?).
It's a fear that emulates the "my-period-is-four-days-late-could-I-be-pregnant?" baby fear of years past, but worse.
Worse, because I never know when a baby is going to appear at my side with a loving friend who just wants me to hold and love their bundle of joy.
They're like the clown in Poltergeist.
They appear at the most inopportune times, like after having a LIVE vaccination.
I do not have any of my vaccinations. I could possibly contract small pox from a small child. You'd be scared of babies too if you were me.
I never was a "baby person." I always said I wanted to adopt or birth a child potty trained and talking. Before that, in my mind's eye, they are just crying and pooping machines, but It's only gotten worse through the years.
My actions have been taken to a whole new level.
I find myself cowering in corners when a child appears in my friend's arms, and being in my late twenties, babies are appearing in all my friend's arms.
They're like a little army surrounding me just watching me with those big adorable eyes, cute baby giggles and drooly gurgles looking to wage their infectious weapons of distraction on me through snuggles and affection.
I want, so badly, to participate in their lives and be the loving, caring, touchable nurturing woman-figure with them, but then my instincts and reality kick in. I find myself genuinely meaning to, wanting to go to that birthday party or baptism, but then when the day comes, I can't get myself out the door.
I'm like a cat that someone is trying to put in the bath. I'm suddenly an agoraphobe locked in their safe haven, and there is no human intervention that will get me out. The jaws of life could not extract me.
I wonder how, exactly, can I be at the same exact point in age as these other late twenty-something women, my friends and family, and yet be ions, light years away?
Everywhere I go, everyone I see, suddenly it's baby, baby, baby.
I have officially entered the "baby stage" of living where all my peers have just had, are trying, are talking about trying, or are thinking a lot about having a child.
I'm not there, not even close. I'm far beyond my child bearing days that ended at the ripe old age of twenty-three.
Worse, I'm scared to show my love and affection for these beautiful mini-beings when my stomach is getting twisted in knots from the inner turmoil of my fear.
But I grin and bear it, planning nurseries, educations, and sometimes, if I can handle it with the assurance that the little one has not been exposed to anything in the last 5 days, had a vaccination, has a runny nose/fever/cough/rash/questionable anything, a play date.
So bring on the babies friends. This fear is something I will conquer, or at the very least, learn to accept with class.
But that doesn't change the fact that babies scare me.



Friday, February 19, 2010

SPECIAL REQUEST: Storm It Up

I have a hopeful request to make of all of you...
My husband, Jeff, is battling lung cancer.. This is a very difficult time and as his wife my deepest desire is to bring as much joy and love into each day of his life. When I heard of the concept of a card storm I knew instantly that this would be something that Jeff would enjoy and appreciate - something that would fill him with hope at the generosity of others; most of whom he will never even know. Receiving cards, funny and encouraging, inspirational and even personal (if you wish) will surely lift his spirits and bring him endless encouragement and added strength - all of which will be needed as he faces this battle.
For those who have not heard of the concept (just as I had not before) - a card storm is created by many kind hearted people who are willing to go and buy or make a card - or just jot down some short note, or well loved joke - or draw a picture if so inclined - and mail it to someone such as my husband with the knowledge that such an act will make a difference, bring a smile or a laugh, and help ease the difficult moments that each day might bring.
If willing please mail your good wishes to:
Jeff Green
691 Woodbury Road
Springfield, VT 05156
May the Storm Rage...

Dear Anonymous


Thank you for commenting anonymous. All situations are different. With your WBC and ANC it does appear you are too immnocompromised to go anywhere. There are varying levels of compromise. I'm not sure what my numbers are currently, but I'm more than a year post transplant. Not knowing more about you, I wouldn't advise specifics.

Anybody compromised If you do dare venture, where a mask and gloves. The mask helps since many assume you are contagious and a threat to them so they keep their distance.
Bring lots of sanitizer. Use it all the time and then wash your hands thoroughly before going back home, eating, etc. When in doubt, wash your hands, in cold water (warm opens pores and allows bacteria in) for 30 seconds. Try to keep as much space from people as possible. If you need a wheelchair, or maybe think you may at some point want one, use it, since this also keeps people at a distance and more respectful of your health.

Vanity goes out the window for protection. Remember, you are your priority.

I'm able to do these things because the reality of my situation is I have fought long and hard. I deprived myself of things I enjoy in hopes of living a long happy healthy life. It's quite possible I won't. I had to go through a lot of mental preparation to get to this point, and the fear still haunts me. I still get anxious whenever I go anywhere, but I can no longer postpone a life I am not guaranteed of having. I want memories and fun with my family. I found for my holistic health I had to determine what risks I was willing to take to have a quality of life I enjoyed while battling my disease. It's a fight all in itself.

I'd love to speak with you personally to be of better help. My email is hill.stpierre@gmail.com

Escape From Vacation


There are some people who just seem to have it all: the looks, money, intellect, humor, family, friends and style.... There are some people for whom everything just seems to come easily: those great grades, that new promotion, fabulous dream job, relationship bliss and 1.2 kids in suburbia with a white picket fence. There are even some people who just seem to have good luck handed to them where ever they turn in the form of a great sale, winning raffle ticket, jackpot pull on the quarter machine or even the man of their dreams strategically placed after landing their perfect job to settle into their perfect life.
And then, there are the rest of us.. . The perpetually flawed who pull up their boot straps only to grin and bear it to get by.
I like to say I'm perfectly imperfect and embrace all those nasty little negatives. But really, I'm just trying not to be bitter. I'm trying to play the useless hand I was dealt with the least damage. I'm rolling with the punches but definately feeling the hits.
I'm Murphy's Law personified. Have a terrible, awful, I-can't-believe-that-happened-to-you story? I'll take your suffering and quadruple it.
I'm here to tell you the honest truth, that Anybody that puts on a smile and says they're okay, that life is still good, is lying.
It could be good right then, at that moment, in that space in time, but sometimes, in private moments, there are gnashing of teeth and hair pulling breakdowns.
What's worse than being one of THESE poor, wouldn't-have-any-luck-if-it-wasn't-bad people?
I'll tell you, it's having been the silver spoon fed perfect prima-donna previously (Ha, say that five times fast) only to take the right turned path down Dante's inferno to the latter most description.
Here is my case and point, extended from yesterday's discombobulated adventure of just escaping the condo and getting to the aquarium alive with my fried brain.
Today was time to end our stay at Heather's. It was time to get home for some vacation relaxing, because we all know taking kids on vacation is not "relaxing." It's a chore! It's a fun chore, but a chore none-the-less.
We got the car packed and off to the gas station just fine, but once at the gas station, I knew my luck had not changed from yesterday
I discovered my sister's license in my wallet that she had given me to hang on to.
"No big deal. I'm glad I found this. I'll just turn around and drop it off before we head home." I said to myself, happy for the luck I'd found it when I was two seconds down the street.
I put the license next to my glasses case on the steering wheel and went to get my credit card.
At least, thats where I think I put it. That is where I swear I put it, because when I looked up, I may as well have eaten the damn thing (just like yesterday, could happen, especially with the steroids). I may have well as taken it, rippped it to shreds and scattered it in the wind.
The damn license was no where to be found. The attendant thought I was crazy, whipping through my car, throwing pieces of paper and not speedily pumping my gas like any "normal" woman would.
Just a little deja-vu from yesterday.
I decided, my car must be sucking up these pieces of paper. There must be some paper monster in the dashboard making me appear crazy.
Low and behold there are plenty of little crevices that it could have slid into.
I just wish that they would slid out, preferably into my car.
Heather's license is now MIA.
It's my fault.
When she called to remind me I have her license (since we do have twin telepathy this was 5 minutes after the incident), I tell her the story and promise to have J check for it.
But it's too late for a nice peaceful trip, the damage has been done. The tone has been set. We're off an adventure just driving.
I took my normal medications to be assured I could function.
Whoppsy. I took my normal medication that alter my mind and get me high to be comfortable through out the day. There is a reason why I don't usually drive. I quickly started feeling the jitters from the speed of the prednisone jacking up my adrenaline, the fact that I had no idea where I was and was relaying on a computer to guide me safely home, and the pain meds I had taken just to function.
Of course, getting home couldn't be that simple, halfway through the trip, traveling a perfect 65 mph on the highway, I slow down seeing the results of a speed trap, only to have the officers step out, point directly at MY DAMN CAR, and whip his thumbs to the side.
SSSHHIIIITTTTT!!! and a hundred other expletives I no longer say even in my head since X will repeat them (I actually have a special video showing one expression I think he learned from a cousin but blamed on Daddy).. I'm getting pulled over. I wasn't speeding?! What was I doing. I have no idea where I am.
Then, oh, no. Don't pull me over in front of X. We had just gotten over having a conversation about how he loves police officers. He wants to be a cop more than everything. This whole experience could ruin his grand ideas of saving the world just because one prick is going to give mommy a ticket (and with my life, I knew I was getting a ticket, even though I wasn't sure what I had been doing).
I pulled over and started the long reverse backyards.

How ironic. I spent the last week and a half volunteering my time, busting my ass, for free, writing four grants, over one hundred pages, stressing myself until I'm sick so, hopefully (cross your fingers and pray still people), Charlestown NH can have a new, eco-friendly Police Station, and I'm getting pulled over.
FABOOOUUULLLOUUUSSS.
"License and registration, please" The thin leather faced officer with aviators and a non-nonsense, I'm a cop attitude said.
"I am so sorry officer." I started.
I had no idea what to say. I haven't been pulled over in years. I haven't gotten a ticket since I was 16. I wanted to cry, show him my handicapped placard, tell him my life sucked and I just could not have anything else added to the insanity because it may push me over the proverbial edge.
I just couldn't get out the words. I'm bad at begging and appearing pathetic. There have been many times I wish I could, would, I even should, just burst into tears to get what I want or need, especially from doctors, doctors hate crying patients, especially strong ones, and of course, this is where I have an edit button.
"Do you know what you're being pulled over for?" officer asked.
"Actually, not quite. I thought I was going 65."
"The speedlimit is 55 ma'am."
MotherF****er, of course it is.
"Sorry, I'm from NH. The highways are always 65mph and I'm just trying to get home."
"How old is he?" he acknowledges my son.
"Six" X manages to squeek out.
"Wait, does he have a seat belt on?"
OH NO!!! I whip around. If X had taken off his seatbelt during our road trip and I was getting pulled over all hell was going to break loose.
X showed his seatbelt.
"At 6 he should be in a booster." The officer stated.
"Oh, I'm sorry. I thought it was based on size and he's over 70. . . " I trailed off thinking, "He says I'm speeding. He thinks my child is poorly restrained. He knows I'm not from town and will never contend this because it would just be a huge inconvenience. We're coming back from a mini-vacation in natick. My son has a chuck-e-cheese ball next to his nintendo DS. I pulled my license from a LV purse in a prada wallet wearing my kenneth cole sunglasses. Just get me out of here."
Bail to escape from Mass cost $190.
F, you called it.
After driving off X and I were both silent.
My head was ranting like a character from "The Invention of Lying," thinking about how much I despised cops, definitely more than lawyers, but I knew I had to tred lightly since they are X's heroes. He has a whole life plan that includes training K9s and being a detective. I can't squash that. I hope the whole event didn't.
"I hate cops," suddenly came the defiant, angry voice from behind me. "I'm going to grow up and be a bad guy."
Uh-oh, just what I had worried about. I bit my tongue. I was going to have to grin, bear it, and say, "No, Xander. He was just doing his job. Mom was being unsafe and it's his job to keep everyone alive and well. Cops do all sorts of good things." I said, overly sweetly to hide the contempt in my voice since deep down I was thinking "yeah, when they're not sticking it to poor moms who think they're abiding by the law."
Silence.
"What is it your worried about?" I asked.
"I'm worried he took all our money and now I can't go to college." X whined.
WHAT?! You really never do know exactly what is going on in those minds of theirs. College? Really?
I, finally, just thought the situation was really funny at that point.
"You can still go to college. I'm just mad because I did something wrong, now I have to pay money I don't want to, and worse, I have to tell Dad who is going to pick on me."
"HA-HA! Dad's going to pick on you!"
That was all I had to say. X decided to join in on the fun making early. I heard about that ticket the whole way home, but guess who got the last laugh?
Later that night, I was getting ready to hop in the shower for some relaxation when the phone rang,
"Mrs. Ford?" came the crackley voice on the other line. "Is this Mrs. Ford?"
I almost hung up right then. My name isn't Hillary Ford. If someone is asking for HF they are either looking for someone else or soliciting, either of which is an annoyance.
I was annoyed.
"Yes" I said tentatively, curious as to who it was and what they were requesting.
"This is The Police Chiefs of America calling. . ."
UGH. Yes, in the past, I had donated to good old law enforcement.
"Are you calling looking for money?!" I asked, shocked and awed, mouth agape, that the very day they decided to take $190 from me I'd also get a call to donate, "Because if you are, I've all ready given."
Click.
Nope, definitely not bitter at all.

Parenting with Chemo Brain

I am a huge discombobulated mess.
My brain might as well
 be malfunctioning mush with randomly firing synpases zapping messages at a whim forcing me to scramble in disorganized circles claiming I'm "getting ready" or "going somewhere."
Studies show The effects of "chemobrain" are seen, probably as a side effect of stress, before any therapy even starts. 
I tried everything to prevent the forgetfulness, memoryloss, disorganization and plain old brain chaos that comes as a side effect. 
First, I organized my house so everything had a place. Who needs to remember if it's a habit? I kept up with activities to save my mental faculties: reading, writing and learning, but still about march 2008, when the stress of a 2nd transplant and my husbands illness was too much I began to feel the big effects.
 I could no longer make plans. I had no long term plans what so ever! I had always been a planner. My whole life was quesi planned then suddenly the future was an abyss of nothing. I'd try to make plans in my head for the following day only to be met with a frustration headache that once only hit when I tried to attempt calculus. 
I thought it was the stress. I thought maybe it was grief after having been disappointed so greatly by the return of my cancer and all I had looked forwrd to with anticipation only to be disappointed.
Maybe it was a self protective mechanism. 
I knew the chemo, transplant and radiation contributed. I also admitted that, yes, pr my pain anxiety or sleep meds had something to do with it.
Again I tried to prevent any further decline. I started to write everything down, sick of people using my memory loss to scapegoat things. I created my own electronic memory.
 I never imagined it could get worse!
 Now I can barely make it out the door without my mind darting in a hundred different directions it doesn't need to go. 
Do I have enough money, food, water? Do I have my medications? What about x? Does he have his drink, ds, bag, whatever? Then, inevitably, I'll make it out the door with enough granola bars, but forget my glasses, which I NEED. 
Today x and I went on an adventure to the boston aquarium. We call our excursions adventures. 
It shouldn't have been a big deal. It's right down the road from heather's, but it felt like a big deal, probably because growing up cities like boston were far away and trips wre rare family events. 
I was treating it as such. 
Of course, just to make things difficult, in true worst case scenario form, last night p woke up with a fever, coughing and wheezes with retractions. 
Retraction are a sign of respiratory distress.
 I made sure to take my levaquin before I left so as not to bring anything down only to get caught next to this infection. 
Prednisone is an immunosuppressive drug so with this I'm incredibly immunocompromised in addition to my all ready weak lungs. Whenever someone announces an illness in my presence or presents an illness, my mind shuts down. Fight or flight kicks in. 
 I have got to get out- immediately, much like a caged animal confronted with a predator. 
This weighing on my mind, I gathered x and my things and escaped the house only to make it safely to the parking garage, look around, and realize the ticket for parking I had just snatched out of the machine two seconds earlier was missing. MIA. 
I had put it on my steering wheel next to my glasses case, at least I thought I did. For all I know I crumpled up the piece of paper and ate it (definately a possibility, especially with the steroids).
I might as well have just chucked it on the ground and stomped it. Two minutes after getting it, it could not be found in my purse, pockets, floor, coat, bag, you name it, not there. 
My $13 parking had just gone up to $38. Ouch.
 Thank good ness for dear heather who has an aquarium membership that got us in free. The aquarium is great, my budding photographer and animal lover loved it, especially the animal ambulances which could be mambulances (mammal ambulances) or animalances (animal ambulances), but not quite worth $50 for the hour it takes to conquer.
 At least Boston even takes good care of its marine wildlife. 
I did find it pretty ironic that there was a gigantic "legal seafoods" across from the aquarium where we could go eat after x saw the beauty of living under water wildlife. C'est le vie. 
We didn't eat there though. X missed his cousin pierce soooo bad, or so he said convincingly enough to drop "disney on ice," which I so desperately wanted to see. 
Despite the brain chaos and disappearing ticket, we did definately have an adventure HX style, and made it back to the condo safe and sound.

Tuesday, February 16, 2010

happy mardi gras

After a week of stressing, with winter break finally upon us, I did what I do best. I ran off. Yes, feeling sick or not, it was time x and I had another adventure or at least a mini-vacation at my sister's. We're now in natick after making the three hour trek yesterday. X certainly didn't wake me up at 6 am telling me to get to work writing so we could leave and get to chuck-e-cheese asap, his reward for making a generous donation to haiti of his own volition from his own savings. Yay! We've now safely escaped to mass for a couple days, despite my guilt of leaving poor crippled j at home to fend for himself.

Sunday, February 14, 2010

Forgetting Illness

Serious illness is a tricky thing.
I liken it to childbirth.
When you are actually in the throws of giving labor, in the most severe agony of your life, hollering, screaming and praying that this pain will end you would commit yourself to a state asylum before ever doing it over.
You would walk over hot pits of burning coals with bare feet. You would banish your entire sex life for celibacy so long as the terrible event that has caused you so much pain never ever happens again.
Then, somehow, magically with time, the memory of all that suffering fades.
Its images are replaced by those of your new loved one and all the fabulous events and memories you experience.
You may even do things that contribute to you going through labor again, that could wind you right back where you started, at ground zero.
You forget to the point that you even convince yourself, "Hey, that was easy enough" until, ultimately, you convince yourself into thinking, "I could do this again."
And then maybe you do. Some people have kids and suffer through labor more than a dozen times. People have started giving birth by the litter with seemingly no reverence to the minimum 18 year aftermath of love, dedication, and commitment they are signing on for.
This is how I I made it through endless chemotherapy and radiation treatments with two bone marrow transplants on the side.
I get little breaks. I have periods of relative health where I experience the world again, almost as if I am experiencing it for the first time.
Food has never tasted so good until after you have been denied its pleasure for months from nausea and vomiting just like the best warm spring day is the first one after a long winter.
Then, if I'm lucky, I keep getting those good days. I start having fun and experiencing everything like it is both the very first and the possibly last time.
With each one of thee events I grow farther away from remembering the suffering of my disease and how close I have come to dying, even how I started to almost beg for it.
I'm starting to think, "Hey, I could do this again."
That's a good thing. It keeps the fighters fighting.
However, as the memory fades the hope, or delusion, that maybe, possibly, the past was all a mistake, that all my health issues have been a big misunderstanding and have actually really resolved creeps into my being.
I begin to believe that if I can do it again, maybe it will be easier.
I think maybe if I let that cough go a couple more days, it will resolve itself despite how severely immunocompromised I am. Then I think, Well, if it develops into another pneumonia I won't spend a week in the hospital and six weeks recovering.
This is where friends and family intervene and push me into seeking treatments I really don't want or think I need or that I've been outright avoiding due to the hassle of deciding which Doctor to call whose orders I am going to have to abide by before inevitably ending up as an in-patient or in line at the pharmacy for an hour, which I think if you reread Dante's inferno is a circle of hell, where the insurance will either deny me completely or charge me a $50 co-payment for antibiotics needed to keep breathing.
The important thing for caregivers of us to know is when to intervene.
My friends and family do.
After the week we had I thought I'd probably be getting sick.
Stress causes immunosuppression to the point that during treatments I would sometimes jokingly accuse anyone of causing me stress of trying to kill me. It's like licking the slide at a playground. Stress flings open the door to allow opportunistic infections attack.
I was stressed over the probability of both Jon and I being disabled. I was stressed with his appointments and the fact that I had chosen last week to actually accomplish some WORK for the first time in a long time with a deadline.
Jon didn't have his surgery. The MRI showed a 25% tear in the middle of his achilles but the swelling and fluid interfered with the image too much to proceed with a surgery.
He is in a boot for four weeks until a repeat can be done. If surgery isn't recommended at that time then he'll start rehab.
It's going to be a difficult four weeks, especially since with the small decrease in prednisone i am all ready experiencing shortness of breath.
I emailed my pulmonologist last week but with no signs of infection we thought it was just me adjusting to the change in medication.
Well, finally Friday I started to feel sick with a head cold. A little cough kicked in Friday night, of course.
As usual any signs or symptoms waited for the weekend when it is almost impossible to access treatment, especially if your me.
By me I mean someone highly specialized with a rare, life threatening illness. Nobody that hasn't all ready claimed responsibility wants it.
I, personally, don't want to drag myself out of the house on valentine's day for the blood cultures and chest x-ray that are standard orders accompanying the levaquin I need to prevent the pneumonia that's coming. I know I have bronchiolitis obliterans. I know the pattern, but I still need the testing.
Why, again, are people questioning why health care costs are so expensive?
At least I wasn't allowed to completely forget the consequences of ignoring my body's messages. I did seek treatment. I am on levaquin. I will be contacting my team tomorrow when they are back in the office
Right now, I'm feeling beat by both reality and my mortality. I had lost touch with the world in a way I never have before this fall. I lost all concept of time and money. I didn't understand basic organization. My thoughts didn't, couldn't, extend into the future.
Now, I feel stuck between my habits of this world and the possibilities of the next, and I'm wondering how to proceed with my new experiences and understanding with reality mixed in.
Maybe, I'll just get better and go back to that blissful, ignorant place where I forget the suffering, but I'll do that after I finish emailing my team.

Happy Valentine's Day

HAVING MOM OVER FOR DINNER
You don't even have to be a mother to enjoy this one.
Brian invited his mother over for dinner. During the course of the meal, Brian's mother couldn't help but notice how beautiful Brian's roommate, Jennifer, was. Brian's Mom had long been suspicious of the 'platonic' relationship between Brian and Jennifer, and this had only made her more curious.
Over the course of the evening, while watching the two interact, she started to wonder if there was more between Brian and Jennifer than met the eye.
Reading his mom's thoughts, Brian volunteered, 'I know what you must be thinking, but I assure you Jennifer and I are just roommates.'
About a week later, Jennifer came to Brian saying, 'Ever since your mother came to dinner, I've been unable to find the beautiful silver gravy ladle. You don't suppose she took it, do you?'
Brian said, 'Well, I doubt it, but I'll send her an e-mail just to be sure. So he sat down and wrote:
__________________________________________________________
Dear Mom,
I'm not saying that you 'did' take the gravy ladle from the house, I'm not saying that you 'did not' take the gravy ladle. But the fact remains that one has been missing ever since you were here for dinner.
Love, Brian
__________________________________________________________
Several days later, Brian received an email back from his mother that read:
____________________________________________________
Dear Son,
I'm not saying that you 'do' sleep with Jennifer, I'm not saying that you 'do not' sleep with Jennifer. But the fact remains that if Jennifer is sleeping in her own bed, she would have found the gravy ladle by now.
Love, Mom
LESSON OF THE DAY - NEVER LIE TO YOUR MOTHER

Friday, February 12, 2010

My Achilles Heel


An Achilles’ heel is a deadly weakness in spite of overall strength, that can actually or potentially lead to downfall. While the mythological origin refers to a physical vulnerability, metaphorical references to other attributes or qualities that can lead to downfall are common.

The strongest and largest tendon, the Achilles tendon connects muscles in the lower leg with the heel bone. Sports that tighten the calf muscles, such as basketball, running and high-jumping, or a direct blow to the foot, ankle, or calf can overstress this tendon and cause a strain (Achilles tendinitis) or a rupture.

Thank you Wikipedia for it's summary of the "achilles heel" double entrendre.

Don't think the irony of this has

been lost on me.

No worries folks, J's injury will not be our achilles' heel. There will be no tragedy of mythologic proportions suitable for thousand year old texts such as the Iliad. Life has calmed down.

I felt much more relaxed once we canceled our trip to New York. I was really having trouble with the idea of leaving J alone.

I also have all those "responsibilities" I have obligated myself to with the motivation of steroids.

My four Energy Efficiency and Sustainability Block Grants for the Charlestown Police Station are almost complete. I think I may have set a record with writing over 80 pages in 9 days.

I do LOVE grant writing. It is a great feeling to see a project and know that it may not have been completed, or that person may not have had a job, because of something I did.

I also LOVE Valley Orthopedics located right next to Valley Regional Hospital. Dr. John Houde has been a dear friend of mine since we worked together. He and his staff have been incredibly supportive through my battle, and they treated J like family.

They treat all their patients like family.

I called Houde right after J's injury and he had him see his partner, Dr. Weiss, the very next day. An MRI was scheduled for Tuesday night in hopes of having surgery this week, in the ten day window when the procedure is most effective.

Luckily (or unluckily, I haven't decided yet), the MRI showed a 25% tear in the center of his right achilles (the center?) with so much fluid and swelling it was impossible to determine if the benefits outweighed the risk of surgery.

There was no surgery for J this week, just a boot, lots of icing, elevation and pain management. He'll be on crutches for four more weeks, just enough to interfere with our planned trip to FL, which we'll likely cancel, since having him in a boot pushing my wheelchair around doesn't sound like the family dream vacation we'd hoped for.

Then he'll have another MRI and a determination of further treatment will be made then.

Fearing a mental breakdown, I went to pottery class instead of this appointment to learn how to glaze my goods. Aunt Becky, bless her soul, cleaned the house while I was gone so I could return to write in peace. Jon's mom watched X while we ran off to get his MRI.

My head did not explode from the stress.

It may have. It has threatened before.

When J and I were both looking at simultaneous procedures, a bowel reesction for his Crohn's that took out 18" of bowel and me moving to Boston for a clinical trial in preparation for transplant, during J's colonoscopy my eyes started to wiggle.

They jiggled back in forth like nystagmus, an ominous sign of an intracranial bleed or tumor, like my eyeballs were shivering.

I ran to my NP who brought in a neurologist to calm me down.

I thought I may be so stressed Id wind up in a dissociative fugue with complete amnesia or with a conversion disorder that mimicked a stroke.

Seeing my family hurt, without control over the situation, is my achilles heel.

You've heard it now. I would have lost my mind if my son was suffering the way I do.

I combat the stress by thinking

of things I am grateful for.

Study upon study of happiness has shown that being grateful not only adds quality, but years to your life.

Happiness studies are big business right now. There is a whole book entitled, "The Happiness Project" dedicated to finding what makes people happiest on earth.

Studies have also proven that if you put on a smile, grin and bear it, eventually your feelings will follow.

This is not to say if you are clinically depressed or diagnosed with an awful disease put on a smile and everything will be okay.

Try that alongside your anti-depressants, anti-anxiety, and any and all anti-bad feeling solvers you need.

Tuesday, February 9, 2010

Let The Stress Begin


There are a hundred, maybe a thousand, different things that run through your mind when you realize you and your partner are both simultaneously disabled, and not one of those thoughts are, "everything is going to be just fine."
That is an after thought. That's a thought that comes in amidst all the worst case scenarios, all the 'we are going to end up bankrupt and homeless" or "our poor child is going to be an orphan" when your mind is about to explode, bc it can't take the thousand alternate terrible possibilities. 
That is when a soothing thought comes through. Even then you know it's just to comfort yourself so you don't crumble to bits and have a psychotic breakdown at exactly the time you need to get your game face on and move full bore ahead for your family and loved ones. 
This is the three point shot at the buzzer to win the championship moment in life. Either you are in it to win it or you're not in the game at all.
Except with this being life, We all know what the stakes are. It would be easier to be paralyzed by the fear, curl up in a ball, close your eyes and pray for it all to be over. That's how you would lose. Its time to keep your mind right and definately start praying.
I've been popping ativan.
I know it is just Jon's
 achilles heal. We've been through far worse before. He saw Dr. Weiss at Valley Orthopedics yesterday that confirmed he has a partial tear. Based on the MRI we hope to get ASAP he could be having surgery Thursday.
It is a surgery that will take 3-6 months to heal from. Without the surgery there is a higher rupture rate and a longer (4-7 month) healing period.
The timing just sucks. I'm on my steroids so I can have happy bonding time with my family. We wanted to create memories together that would last all of our lifetimes. Now the roles have changed.
Jon is sitting on the couch, unable to move, and I am waiting on him. 
After I get over the grieving and the loss of all the trips we had planned to do while he'll be recovering, I'll enjoy waiting on him. He does take good care of me while I'm sick, letting me stake out in the sick corner, delivering me food, water and medicine, cooking dinner, and cleaning everything that bothers me.
Now it's my turn to care for him, and I don't mind at all. I like it. I just don't like that what could be my last period of health is not going to be spent having great times on vacations. It's not like we can say, "No worries, we'll just change the trips and do them next year."
Who knows what's coming next year?
With this on my mind I've had the week from hell. I've been hanging out a lot with my BFF, lorazepam.
My houseguests had just left before Jon came home injured. I have a full house to clean and no energy. God Bless Aunt Becky who will clean it for us tomorrow. I physically can't haul laundry to our basement machines due to my lungs and now neither can Jon.
I'm in the midst of writing grants for the Charlestown Police Department. It is something i had contemplated doing while I was ill. Less than a week ago my father said he wanted to apply for NH's Energy Efficiency and Conservation Community Block Grant which would upgrade the proposed new police department to an energy efficient one. This entails writing four separate grants one for the building envelope, one for the PV System, one for the solar hot water and space heating, and another for lighting upgrades to energy efficient fixtures.
Oh yeah, and it's due Feb. 15. 
I'm feeling the stress, and the only thought that has helped relieve it so far is canceling the family trip to NYC this weekend that we had planned.
We had only purchased tickets to see The globetrotters at Madison Square Garden. I think we can sell them. I just don't like the idea f leaving Jon alone at home when he is struggling so badly, especially to go do eents we were supposed to be doing together. It just wouldn't be any fun.
Hopefully we can reschedule it for the end of Feb. or spring when my mom has another conference (that's how I go on these luxury trips), and we can all enjoy the experience.
Maybe then I'll finally get my horseback carriage ride through central park.

Sunday, February 7, 2010

CHAMPIONS!


You are on the official site of Charlestown Winter Carnival 2010's Broom Hockey Tournament Winners!
Yes, The Zambonies, after 8 years of playing have finally taken the coveted trophy home, and we all have our fingers, bones, joints, and ligaments intact!
We started off lucky having our 9 am game pushed back to a more Zambonie-friendly 11am time slot, which allowed us all to walk up at a leisurely pace before heading to the ice.
Did that make my friends from college on time?
Absolutely not, and I should have known. It has always been my responsibility to get them up and out the door. We may never have made it anywhere if I wasn't tapping my shoe, checking the clock, reminding everybody that we would have to PAY if we showed up after midnight or 1am, whenever ladies stopped getting in free.
Now it was me, hollering that we have to leave in 15 minutes, that no one will be able to see their hair underneath the cute hats of mine their going to wear, shoving kids in snow suits and boots, and trying desperately to squash the urge to leave them all because they don't know where they're going.
It would just be mean of me to have them try to get around the country by themselves. Take a left at the one yield sign where Charlestown ends doesn't work.
They can't even tell where Charlestown begins.
When Daisy and Co. came up for my wedding, I told her there would be an abandoned building on the left and to take the right onto Rte 12.
I received a very scared phone call saying they they had passed the barn that had been blown over. They thought they had gone to far, and EVERY BUILDING was abandoned here.
We showed up 15 minutes late, halfway through the first game, despite my best efforts.
Didn't matter anyway because we were up 3 to nothing.
I brought the sleds, and the conditions were icy, which means fast and furious. There were horse rides and a bonfire. It was smaller than in years past, but just the perfect size where you could socialize happily with everybody.
I didn't play. Not only did I not play, I stayed off the ice. The first time I stepped on the ice it was before our second game and I was determined to get a team picture. I was waving and yelling and nobody was paying attention.
Nobody was paying attention until I got on the good ice, took one step and fell flat.
Then everybody paid attention. The whole ice fell silent. People rushed to me like I may have shattered.
I didn't realize exactly how loved I was until I took that fall, and then I thought, "HA! Now, next time you'll pay attention so I can get my picture. Hehe."
I have such a great group of friends. I did end up getting a group shot after the game.
That first dinger didn't stop me from a celebration hop onto the ice during the championship game though when Jon got the winning goal with 2 minutes left off an assist fr
om Brynn. I was leaping, hollering, and feeling good from some mango margaritas when I decided to launch out and hug my husband the broom hockey hero.
To bad I missed and ended up falling on my knees again. Oopsy.
After that it was back to the house to the best group of house guests EVER. I wouldn't have even known they were there if I didn't keep tracking them down and forcing them to hang out with me. The numbers worked out perfect. Each family was able to get a room to themselves and share the second floor bathroom.
One family wasn't able to make it at the last minute due to car trouble, but another couple came up, claiming their spot.
It was so much fun having all of us together with out families after all these years as friends.
We met in 2001 at The College of New rochelle less than a month before
the towers got hit. We bonded all through college, through clubbing, dating, marriages, babies, failures, successes, near fatal
diseases, divorces, baptisms, major world disasters. You name it, we've done it, and we've been through it together.
I started to say I was so lucky to have them as my "framily" (friends that are family), but these girls can be even better than family.
I had the whole group here all weekend and not one entered passed the entrance hall in their muddy boots. One family member came later Sunday and trekked more mud through the whole house in two minutes than the whole group did through their stay.
How could I not love them?!
I'm a very lucky girl.
To celebrate the success we took a trip to Claremont's Super Walmart, which NH has but NYC does not, and spent a serious two hours checking out the goods.
Lexi got spoiled by her adoptive big sister Laurette with hair supplies and a long lesson on how to straighten and care for her beautiful hair. We all just want her to know she is beautiful inside and out.
We made it through the weekend alive and intact. The house guests had all left, and I was dreaming about Jon coming home from his basketball game to take over the kids we had here playing (5 of them including X) so I could nap when the door opens and in walks my father, sports training bag and crutches in hand.
The sports training bag was our go-to athletic emergency bag. It contains wraps, air casts, and a cryo-cuff, a special contraption that wraps an ankle or knee and then fills with ice to properly ice it.
Behind him is Jon, manuevering very slowly.
"What is this?" I stammered, confused. "Did you two plan to show up together? What's going on?" I asked.
"Well," my dad said, making that face, the face that says something has happened I don't know about, "It was kind of planned."
UGH.
"I tore my achilles playing basketball." Jon said, sheepishly.
"AAUGHGHGHGAAUUGHGHGHGH!!! M****F******, D*****, ****, ***
**!We just had to go back to being the family that just can't get a break!" my mind screamed. I took a breath. I tried to hide how pissed I was.
I'm finally healthy. I finally have the capacity to do things we enjoy together as a family. My lungs are already decreasing in function, and J gets hurt.
I'm having visions of our beautiful family weekend in NYC go up in flames in my head. Cancel the carriage ride through central park that I've been wanting to take since I was a little girl. Cancel the globetrotters game. Cancel the central park zoo. Cancel
the Waldorf where we can stay because my mom is a rock star big wig that gets swank hotels.
Jon needs surgery.
Oh how quickly things change, but we are still champions!
Luckily, I have a great friend who also happens to be an orthopedic surgeon.