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

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.

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.

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.

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.