Fa-la-la-la family

It’s been fa-la-la-la family time since Friday.

Please, no worries, erase those visions of hospitals beds dancing in your heads.

I managed to stay at home for the holidays through the divine intervention of steroids.

Spending another Christmas in the hospital or isolated was too much for my poo

r psyche to bear, especially with as ill as I was feeling.

All I wanted was to be able to enjoy the holiday, especially since the past 5 months have been so difficult.

It’s clear no more holidays are promised.

I’ve walked the line of death many times before. The onset of problems usually came on swiftly and in a manner that I could either choose to accept or fight.

I had never before had a debilitating problem languish and consume me to the point that death looked like a relief.

I’ve never before realized how fragile life is, and the knowledge that mine remains over my decisions to take or not take a series of pills is something interesting to fathom.

It’s also liberating to know that I do have some control. I can decide my fate to a point.

But not yet.

Now, I’ve been walking back and forth from the car to and fro family’s houses just because I can.

I went to Walmart with my sister just to wander since I can now walk.

I can now cater to Xander without wondering if getting him spaghetti-o’s will send me gasping for breath.

I don’t have to remind myself to breathe in the nose and out the mouth, putting one small step in front of the other to try to manever the easiest tasks.

Yes, these are the thoughts that consumed me. I couldn’t move without reminding myself to breath.

The very essense of life, my breath, now had to be monitored. I started to be consumed by how much intervention and monitoring I would accept on behalf of my body anymore.

It’s amazing the small obstacles that can hold even the most resilent person back.

Mine was mostly the fact that my oxygen tanks are ten pounds and hang over one shoulder, far too heavy for me to manage for any sort of outing without a wheelchair or person to assist me.

I asked for the 6 lb canister, but a well meaning tech filibustered me into accepting the tens “in my best interest.”

He talked so long and so fast regarding his logic that I had to take a nap after he finished, giving in to his suggestions, even though he had never met me and had no idea I’d lost most my muscle mass from months in the hospital.

Dec. 26

I made it to, and through, another Christmas!

We’ve had a really exciting, nonstop, past couple of days.

After my appointment on the 22^nd I’ve been steadily starting to feel better.

The steroids have done wonders for my lungs. The mucousy frothing in the morning had gone away by day two. My chronic cough is now mostly done, and for the first time in four or five months (who’s counting?), I can take a deep breath.

I can do the little things that make life worth living, like talk, joke and enjoy myself.

Yes, those small enjoyments had left me. I didn’t have the energy to breathe and speak. I was constantly reminding myself to breathe in through my nose and out through my mouth or to walk more slowly, one step in front of the other.

I was trying to retrain my body in terms of my most recent disability. I’d never before encountered a disability I couldn’t compensate for.

I finally met my match.

I can honestly say I’m perfectly content and happy staying on steroids forever if I never, ever have to suffer the way I have been again.

Being manic, hairy, and puffy with compression fractures is better than slowly wasting away on the couch.

It’s better to burn out than to fade away.

I’ve still been sleeping a significant amount, but I’ve been enjoying my naptimes since they’re now surrounded with activities like going to the movies or seeing friends.

I’ve also been able to socialize again, which has always been my favorite holiday pastime. I’ve seen my three best friends from high school for some bonding time. Heather and her family came in, along with Grace, Patrick and my grandparents.

It’s been a nonstop parade around here.

Christmas Miracles

With my first dose of steroids into me on Tues. and the second dose taken early Weds. Morning I decided it would be fun to try to jump right back into life.

J and I had all ready taken our “tough” stance with X who has been acting like a sugar crazed Christmas junkie for the past three weeks, whining, whining, and whining.

We laid down the law and now he has to earn all electronics with good behavior.

Even the “Santa is coming” didn’t work to curb his breakdowns.

I’m sure that my depressed

affect also contributed to his behavior. He’s been diagnosed with depression and anxiety, obviously it worsens when mine dose, no matter how hard I try to hide it.

But with just a little incentive he woke up in

the morning and gave me a back rub in hopes of earning Mario Bros.

We got to school early with sleds and Ms. Thurber’s Pampered Chef order in tow.

I dragged his wheeled bag in and he carried his teacher’s precious stoneware (He’s the safer one of the two of us).

I jacked my oxygen up to 3L and hopped out of the car, only to start gasping for breath by the time I made it to the door, even with my calf length down parka and scarf over my nose, tucked securely into my glasses to keep from shocking my lungs.

Thankfully good Miss Rogers was waiting at the door to point out my line had caught and was in my nose but not attached to the O2 tank.

That was exhausting feat number one for the day.

I guess steroids are not miracles.

I feel like Jacob Marley, Scrooges partner, who is destined to an eternity of carrying heavy chains to atone for his sins.

Except, clearly, I’m still alive, and epitomizing what it’s like to carry a cross.

I did manage to attack most the presents before falling asleep at 10:30.

I woke up 2pm to pick up X and shop for some last minute presents with X and mom.

Walmart was a zoo and mom decided I needed not only a wheelchair, but a motorized scooter, which would have been fine had X not been determines to try to drive.

The walmart trip was a fiasco, leaving both X and I so pissed off we had to separate, he going to my mom’s house while I relaxed at home.

He also had a break down in the car that he had forgotten to mail his letter to Santa and thought he wouldn’t be getting a single present this year.

This is how anxiety shows in a child.

It’ll get better as I improve. I’m hoping the improvement will be leaps and bonds by tomorrow.

I have a little man expecting a miracle.

The evening did go better.

My grandparents showed up from Florida for the week, then J and I made the trek to the parent’s for dinner.

Most of the family is home for the holidays minus Heather, Allen and their kids who are spending Christmas morning at their home in Mass.

I was able to fall asleep early (6:30) for the night, waking twelve hours later despite the 50 mg of prednisone I'm taking. Hopefully, I'll be able to stay up a little later tonight, especially since dinner starts at 6:30.

Tonight it’s church and dinner with friends and family. Brynn’s coming for dinner, and hopefully, I’ll get my great big grin back that the family has been missing so much.

Below is the latest update from my father, who unfortunately has lost the hopeful touches he generally adds at the end of his notes. This has been a very difficult 4 months. But good times will hopefully come around again, and Christmas time is the perfect time for miracles, just read the news health care legislation passed through the senate.

Update from Vic

Hi To all, Merry Christmas and Happy New year
"May love be in your Heart and Peace be in Your Soul" I actually remembered a quote from our Priest, Father George, from last Sundays sermon.


Hillary had a bad day today. She can hardly walk without being out of breathe. She can barely make it from the house to the car. She needs a wheelchair to get around now. Her lungs are getting worse. They put her back on steroids to help her breathe. The steroids we believe made the cancer come back so aggressive last time. Not much choice now. We have been dreading this. We hope to Exactly 3 years to the day that we gave her the last rights. Didn't think she would make it to Christmas that year but she has surprised us. Please read her blog posted below.

Dr Gaudier wanted to admit her yesterday but Hillary was able to get all the tests they would do in house and she has oxygen at home. So it's home for the Holidays.

I didn't get to finish this until almost Christmas eve Day. Again I am very tired but can't get a restful night sleep. Hillary Jon and Xander were over for diner tonight. The steroids are already giving her more energy. I just hope they will repair her lungs and not have the cancer come back. The last 5 months have been very painful for her. She has lost that wide smile. The smile shows pain now. I just hope that the projects and things she hopes to accomplish will help her Spirit. Hillary has always exuded spirit, it is catchy. She can bring it out in complete strangers. Now she has to bring it back to herself.


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

A Christmas Miracle

Mary came to me in a dream last night.

Well, at least she almost came to me in a dream.

I haven’t spoken much about the role faith has played in my healing and will to live, but it’s not a subject that can, or should, be ignored any longer.

With any thought regarding mortality beliefs about what happens in the after life come into play.

I have always been fortunate to have a deep faith in God and a confidence in the existence of relief in the afterlife from suffering.

Unfortunately, it is just this faith that terrifies me as well.

Earlier in the week, I’d gone to sleep early, like I usually do.

The GVHD causes such pain in my eyes that by 6:30 it hurts too much to keep them open.

I go to sleep not because I am tired, but because the artificial lighting and pain is too much to bear.

I’ve officially had all the pain I can withstand for the day.

This dream was like others I have had before, I was being attacked by demons.

They were demons that on first glance looked like people, gorgeous people, but quickly warped into monsters tearing at my skin.

They claw at my body and try to tear it limb from limb.

I again managed to shake them away, not by force, but by faith.

I stated that I belonged to God and they disappeared, just as they usually do.

This time was different, however.

This time I didn’t wake suddenly, disconcerted and in a cold sweet after shaking the demons off.

This time I continued to dream and after the evil had left, I could see a bed in front of me.

It was a mattress on the floor in a ramshackle abandoned building that appeared to be in a building belonging to St.Mary’s Church.

The sheets were dirty, but suddenly a light from the hole in the ceiling began to shine down on it, and as the light was shining down, star-like objects began falling onto the bed.

I suddenly felt at peace.

Then, I hesitated.

I felt apprehensive about what was about to happen, and just as quickly as it began, I heard a soft nurturing voice say, “Do you want to do this again?”

I said “yes,” and as soon as the words had escaped my lips, the image, the voice, and the room was gone.

I’d been sent back down several levels to the base floor of the school, that appeared to be a cross between St.Mary’s School and The College of New Rochelle, both Catholic schools I had attended.

I was left to wander around the corridors and into a classroom, and it was there I woke up.

I woke up face smeared to my bed, my body feeling like the weight of the world was on top of me and wondering if I was, in fact, dead.

But I hadn’t died. I’d opened my eyes, again, like I’ll do so many times in the future to see my husband, staring at me, concerned.

The following day my respiratory system worsened, and I knew that I could choose to let the process take its course or run to the doctor for my steroids.

I chose to get the steroids.

Xander had prayed for a Christmas miracle.

He had prayed that I would be better by this time this year.

Miracles do come. They come in all different shapes, sizes, and figures.

Just because my health came in a pill does not make it any less real, I am still cancer free.

I do not want to be his reason for losing his faith when it is faith and love that has kept me alive for so long.

During this Christmas season I hope that while we’re all running around shopping, baking cookies, and celebrating with friends and family that we can all remember the true reason we are rejoicing.

All I want for Christmas is Steroids

I always get sick around Christmas.

It's a given, every year it’s similar.

I think it started in the first grade. I remember since my mom's

employer was taking all the employees’ kids to the circus and then to spend the night at his house.

Guess who got pneumonia and couldn't go to the circus?

Instead I was left at home with my “sick blanket” on the floor next to the fire watching “Scrooged” (You know, The Charles Dickens remake with Bill Murray) with my parents on tv.

I made up for missing the circus in first grade by going with my best friend to Ringling Bros. in College, but low and behold, at Christmas time, I still got the dreaded case of bronchitis that would ultimately become pneumonia.

That year I blamed it on the stress of finals and my disrespectful smoker housemates who even through me hacking, wheezing and spitting up rainbow colored snot still refused to go out side with their coffin nails.

And Just three years ago this week, when I was undergoing the chemotherapy regimen for my first transplant, my body acted up again.

This time it was more of an unknown bowel issue that caused my abdomen to swell to the size of a 7 month pregnant woman.

I blamed it on all those mimosas I drank at a Christmas party despite being immunocompromised (I’ve never been able to tolerate orange juice, it makes me hrow-up, so why would I couple it with blubbly?)

Luckily, I was so heavily medicated I didn’t realize how bad it was.

I even thought it was just for fun and games that the Priest came to give me my last rights.

What really hit me that Christmas was my three year old son coming to the hospital and asking if I would “spend the night” at his house for Christmas.

I’d been hospitalized for so long,

he thought the hospital was my home and my home was where I stopped by in the interim.

I didn’t get to spend Christmas Eve at home, I spent it with Heather at my bedside, but I was granted a leave for 6 hours on Christmas day.

Needless to say, my lungs have been behaving badly for a long time, especially for a woman who has loved and treasured her lungs through out her life.

It not only seems unfair that I can barely breathe, it feels downright mean.

It feels like God is a big bully with a magnifying glass scorching ants to within an inch of their lives, and I’m his favorite target.

Since August I have struggled daily with my ability to breathe.

Today I finally gave in, cried uncle, and took the steroids.

Then I cried and cried and cried some more. I don’t know how much more I can take.

Having difficulty breathing is the scariest side effect I have ever experienced. Simple tasks: walking to the car, driving x to school, getting milk or going to a friends house were suddenly insurmountable tasks that even the thought of accomplishing left me stricken with fear.

I tried the route of treatment for Bronchiolitis Obliterans of zithromax and inhalers in hopes of preserving some protection against my cancer.

I finally came to accept that the level of functionality and quality of life I was experiencing was not acceptable to me.

I did not feel like I was living.

In fact, I felt that allowing myself to die may be the better route.

I never thought in my wildest dreams that a person could suffer so deeply for so long.

I certainly never thought that person could or would be me.

I finally reached the decision not to be concerned with what may happen down the road anymore.

My quality of life tanked. I’ve been feeling like a prisoner in my own body with no means of escape for too long.

The inflammation in my lungs had slowly led to a decreased ability to walk, especially outside. Getting X ready in the morning and into the car 5 ft from the door of my home would leave me gasping for air.

If I can't do this, I don't have much left.

I have spent too long inactive due to fear of my lungs refusing to exchange air, sending my body into shock, colds sweats, black-outs, pant wetting and all.

That is too scary to handle on my part, and I certainly won’t allow X to see it.

He’s seen to much all ready.

It's time I accept treatment and hope for the best.

I'm happy for the time I have been able to live. I'm jumping straight into steroid treatment at 50 mg a day so I’ll be able to enjoy the holiday season.

I hope everyone else enjoys it as well.

Merry Monday

Or a Merry Funday if you're Xander.

People who have cancer check my mom's website and checkout my website now.

Do not leave any food out for my dog Nika, especially sausages.

I'm sad because Brittany Murphy died, but death doesn't scare me. Death makes me a little bit nervous. Tell me your feelings too.

I want to say Hi to my friends Colin, Andy, Brandon and Josh. Also, Cassidy, Eli, and Luke.

My friend God, Jesus, Mary, the Holy Spirit. From Xander

I'm finally getting some of that energy I've been wishing so badly for back.

I've also been trying to write (hence the routine) but I was sick of hearing myself whine.

That's all my head was doing, constantly, reminding me I couldn't breathe. I could barely leave the house, my life is over, blah, blah, blah.

I'm trying to turn those nasty voices off, or at least the volume down, and enjoy the capacity I do have.

Forcing myself into activity has worked.

It doesn't alleviate the constant anxiety I have over the fact that my lungs are not functioning properly.

But they're not actually failing either.

I have tests the 28th to determine if the inhalers and zithromax have worked to improve my pulmonary function.

I also have a CT that day to check out, among other things, the status of the infiltrates in my lungs and any possible suspicious node activity (aka cancer).

These past couple days, and probably for the rest of the week, I've been taking one task at a time focusing on family and friends.

I'm finally learning to enjoy the simplicity of it all, and I think that's one great Christmas gift to me.

So much for that body training schedule.

I guess I should have included one or two days to drop X off at school and going right straight back to bed, especially if the evening before I decide to go all out taking him sledding, hot tubing, and playing hide and go seek before doing homework and having a family dinner.

Despite the extra quality time X has been "off."

He's getting whiny and irritable, which started last weekend after he got hit from every which way with the holidays.

According to my teacher friends, no child is normal during the Christmas season. They're all turn into crazed little people counting down the days to Santa.

He is certainly counting down the days. Each morning he goes to the Advent calender and announces what day it is and what's special about Christmas time today.

Luckily, somehow, he remembers it's really about Jesus, Mary, Joseph and God, but he still can't wait for Santa to come.

I'll write more tomorrow.

What ifs

I’m concerned I made the wrong decision in accepting the standard of care to treat my cancer.

I worry that all I have done is transfer one life threatening illness for another.

Cancer treatments are a forever evolving industry.

My mind keeps going over the maybes and what ifs.

There are several of us who choose to move from clinical trial to clinical trial in hopes of achieving the ability to live with relative freedom.

Unfortunately, we all have to make sacrifices based on our decisions.

Those that want to live surviving off trial drugs must live close to a cancer center and understand that they will indefinitely be controlled by their disease.

I chose my course with the idea that graft vs. host was a manageable disease that would allow me to stay with my family.

It is not so manageable.

My lungs remind me every morning.

Apparently, they don’t like the winter weather so much.

Just running out to my car delivers a shock to the system. Moving ten feet outside the house and back has me sitting, hunched over, gasping for breath.

I’ve again acquiesced to the idea the I NEED my oxygen.

I’m lucky someone created it. I’m lucky these medical technologies exist, because in a time not too long ago, I wouldn’t have had the option to grab my oxygen tank and run into the cold.

Having my lungs ruined through treatment was my worst fear.

I almost didn’t know how to spell that word- F-E-A-R

I certainly don’t like to admit when I’m scared. I don’t think I’ve ever put it into black and white before.

But that’s what I am. I’m scared I’m going to suffer more. I’m scared I’m going to be left alone in a hospital under the care of a surgeon while experiencing severe life threatening medical problems (Can you tell I’ve been traumatized by this?) I’m scared I’m going to burden my family and inhibit their ability to live happy lives. I’m scared that I’m going to continue to fight to live only to end up severely disabled with no quality of life.

I feel like I need to decide, finally, where I need to draw the line.

It’s been haunting me.

I think I may have drawn the line a long time ago had it not been for my family.

Admittedly, most my fears have to do with the future.

That sounds silly when tomorrow isn’t even promised.

I try to keep chugging along, minute to minute, hour to hour, putting one step in front of the other, one day at a time.

I don’t know which of my fears are worse now: the fear I have of living or the fears I have of dying.

During my months in the hospital I finally accepted that my family could function without me.

We have been really blessed by the love and support we’ve received from our community.

Jon’s parents have helped greatly by being available to care for X and providing him with the daily consistent schedule he so desperately needed that I couldn’t provide him. Having the consistency of a loving environment that he can rely on day in and day out significantly decreased his anxiety and depression so he could focus on being a child.

This was exactly what I'd been hoping for since I'd gotten sick.

I thought I’d finally let go of my guilt about not being able to be the perfect mom I always hoped I’d be.

I mentally had prepared myself to die.

Who really comes back from months fighting to breathe?

It was relatively easy to transition back into the dependent role of illness, but it has been much harder transitioning back to the idea that I’m going to survive.

It’s been hard to muster the motivation to treat the simple

ailments associated with my GVHD, such as my “geographic tongue.”

Leave it to X to point out what I’ve been ignoring. He asked this morning why my scars were pink.

To him it looks like my wounds are somehow coming back to life.

And that is kind of how the skin looks. In the areas where I’ve experienced severe depigmentation (I’m now extra white), there are pinks rashes.

Finally this morning I decided to do a body check only to discover skin peeling off at my bra line. It's amazing how cancer can destroy such a beautiful body. I'm very fortunate I had a life free of body image issues. The scarring, decoloration, and hair loss doesn't bother me like it may others.

What does bother me are the wounds that come from the inside out.

I’ve been breaking out the betamethasone cream and treating isolated area, but the rash has taken over my abdomen.

It looks like it’s starting to creep towards my neck and thighs.

My dexamethasone mouth wash has kept my mouth problems at bay.

My eyes are finally feeling decent without the use of contact lenses thanks to a regimen of doxycycline and restasis.

I meet with Dr. Dana on the 6^th to discuss possible enrollment in a clinical trial, but I’m finally happy with my sight.

Hopefully I’ll be happy with the treatment regimen for my lungs, which I only now have all the medications in the regimen to treat Bronchiolitis Obliterans.

An aerosolized steroid administered through a nebulizer apparently does not exist.

I was told it’s not as simple as just crushing up a steroid and turning it into a liquid and placing it in a nebulizer.

All that did was give me ideas.

I now have singulair, zithromax, advair, and aerobid as a line of attack.

This is on top of the Bactrim and acyclovir I’ve been taking since my transplant in October 2008.

I really wonder how long a person can survive with as much intervention as I’m receiving, but I have finally decided, again, that I’m going to use that time to LIVE as opposed to slowly dying.

Resolution Time

It’s that time of year again.

Yes, THAT time, and I’m not talking about Christmas. I’m talking about a New Year is coming.

Alongside the New Year comes all these hopes and dreams for better living in the year to come, but that’s not going to happen without some resolutions.

Resolutions are just kind of a cool idea, even if they will be ditched and broken by Feb.

After writing their letters to Santa, I tried to get Xander and Lexi to go for this idea.

Kids should have goals. They should have something to strive for, something to accomplish.

Of course, this went over like a bomb in comparison to decorating our tree, eating candy canes and baking cookies.

So there is no word on what the kids want for 2010, but I’m starting my resolution TODAY.

It’s time the fatigue stops kicking my ass.

I need to again be a constructive human being.

No more lying on the couch, talking on the phone and living vicariously through The Kardashians.

That’s so 2009. Those days are over.

I’ve decided what I need in my life is a routine.

I need to train my body back into doing things.

With illness creeping in slowly and taking over my life, I need to slowly creep back out.

Unfortunately, it’s been almost three years since my first transplant and it’s been four since I realized something was very wrong with me.

It’s becoming harder and harder to drag myself back into a routine.

I also still can’t resist the urge to throw myself back into the world full throttle and kick my own ass.

For the past couple months I’ve been having and stressing that I’ll never return to a normal life.

I think it’s time that I strive for a quality of life.

Good news, I'm going to try to get back to writing. I enjoy it even if I am bored with myself. I love hearing peoples' comments positive or negative and knowing there are others like me in the world.

The support I've received from being transparent is more than I ever could have hoped for.

Unfortunately, My lungs and fatigue are severely impeding what I’d like to be doing.

Now for the solution, my resolution is to train my body to work again.

I’m using my athlete mentality like I’ve used so many times before.

I’m going to train my muscles to cooperate. I’m going to go through the motions in hopes that my mind will respond.

I'll wake up and care for X just like I have been. I'll do activities in the morning and force my body to take only one afternoon nap before picking up X.

Once I have x we pretty much have a routine in place, it just needs to be perfected. We play outside, then come inside for snack, watch a show, play a game, then Dad comes home, we eat dinner as a family, then we play some more games together and I go to bed.

Hopefully, eventually, I'll be able to push bedtime back after 7pm.

What, really, is there to lose?

Could this make me exhausted?

Not to worried, I all ready am.

I can always fall back on some more medications.

I could start requesting adderal or Ritalin for energy and trazadone for sleep.

I’d prefer not to take that route.

I’m taking control again of my body and my life.

As things have crept out of my life, they’re going to come back in slowly but surely.

Getting my groove back

Do you ever wake up in the morning and just know you’ll be crawling back into bed to sleep for the rest of the day in an hour?

I know, this probably sounds like a fantasy.

It would have been my fantasy when I was walking up at 5:30 to get X to day care and me to work by 6:45 for a 12 hour day.

Now it’s not a fantasy. It’s my life.

I haven’t been writing much recently because I’ve been experiencing terrible fatigue.

I need to triage my energy.

Some days I wake up, get X off to school, and sleep until the alarm goes off to pick him up.

On better days, I require a three hour nap and a bedtime of about 7:30pm.

After playing with X, hanging out with Jon, trying to pick up the house and keeping in touch with loved ones there is not much left.

Of course, besides the fatigue that I didn’t have last year, I also have the ability to leave my house, which I’ve been relishing.

I’m not just hanging out with the computer as my friend anymore.

No, I don’t need to isolate myself. I can have friends over, or go to their homes, or do lunch and have play dates.

I can now do all those crazy things.

I don’t have to sit around and perseverate on how I could definitely, maybe, die from this disease.

Since I can do these things, I have been. I’ve gone to movies and parties and cities.

The opposite side of this double edged sword is, during the week, I feel exhausted.

I need all five days to recover from my weekends.

And I’m still not feeling strong enough or energetic enough to invite Lexi back on the Weekends since the bulk of responsibilities fall on Jon.

We definitely miss having her company.

I’ve definitely been hit with a lot of personal losses this fall, and I’m only now regaining my footing.

I’ve lost my ability to breathe normally.

I won’t play sports again.

I wonder if I’ll even be able to coach X’s teams, which was always the plan.

Some of my favorite memories are being coached by my father, and I always thought I would be able to do the same for my child.

I probably won’t.

I’ve been sidelined in a big way.

Due to side effects from the chemotherapy, the menopause and the GVHD I haven’t been able to have sex.

This has always been my favorite way to make myself feel better. It’s the best coping mechanism that exists, and I can’t have it (at least not for another 14 days or so).

So no sports + no sex= no life.

Needless to say it has been more difficult to drag myself back into the world after I isolated myself this fall.

Everytime I become sick with a life threatening ailment the world slowly shrinks until all I can concentrate on is myself and forcing my body to breathe and move.

Interestingly enough, my maternal instinct is just as strong as any survival instinct I have.

Even gasping for breath in some of the worst pain I have ever felt I still had the ability to hide my dyspnea from Xander and Lexi.

It’s amazing to me, and That does make me feel alive. I am getting my groove back. I'm feeling the Christmas spirit.

But now, I’m just tired. I’m curling up on the couch and sleeping.

Happy Belated Birthday

Happy Belated Birthday to three of my favorite femme fatales: Yanellie, Brynn and Jill, who all celebrate their birthdays on Dec. 8, the same day as The Assumption of Mary.

I'm still recovering from my whirlwind weekend and trek to Boston on Monday to see the Sex Santa (aka Dr. Goldstein) who's job it is to restore my healthy, happy sex life by Christmas.

I'm heading up to DHMC today for a follow-up appointment regarding the plan of attack in the battle against my graft vs. host disease, and tomorrow, I may go shopping before Brynn's par-tay.

Busy, Busy, Busy

I continue to be babysat.

Yes, you read right.

I had more independence when I was 19 years old.

Except, when I was 19 years old, I didn't vomit daily in public and stop breathing spontaneously.

This weekend instead of being allowed to visit my friends' houses on Saturday, I was relegated to the hotel (not so bad, it was The Waldorf), except for dinner the group decided to trek to Grand Central Station.

I could have gone to the hotel bar, but if you've ever been to a hotel bar you're probably aware that it's a meat market.

A hotel bar would be the back drop setting for a reality series entitled "Men Behaving Badly." They're rich. They're single for the weekend, and they have private rooms.

Need I say more?

I think I would have been safer in Harlem, though as far as infection protection, I'm in a good place.

Since I'm still being babysat for my own protection, Jon is taking me to my appointment at DHMC today. It's important to my family that all information is registered and that there isn't anything I could "hide" from them (their words, not mine).

Yes, I do "hide" information for their protection. Not everybody needs to deal with the seriousness of my disease; however, I guess they would like to.

As for feeling jaded, unfortunately depression goes hand in hand with the suffering I have endured.

I just need to remember why I started writing in the first place, to give my disease and the young people who struggle with all aspects of surviving a voice.

For every person who feels they can take advantage of my site as a public forum without abiding by simple boundaries there are five survivors or sufferers who quietly email looking for guidance.

I hope during this season you will all think of and pray for them.

Focus on The Living

No wonder my interest for writing is starting to wane.
I started writing to offer information and insight into the mind of someone with a life threatening cancer who also has to continue living.
I started because I believed in the genuine good of people and their ability to rise above pettiness when others are in need.

Unfortunately, even those who have suffered still get distracted and focus on the few rough spots in an arena that is genuinely trying to achieve good.
I have joined the health care reform debate because the current system is adversely affecting me and my family. The constant refusals of care and fighting with insurance company after pharmacy after hospital billing department can not be done alongside fighting cancer
Miss Anonymous
You are entitled to your opinions; however, your opinion won’t change the fact that abortion has been legal since the 1970s, and it has been federally funded through the social welfare system for years.
I don’t believe the Pitts-Stupak Amendment will be removed from legislation.
I, personally, agree with it.
That does not change that being pro-life in this instance means being anti-choice.
It is the same as insurance companies denying care by denying payment.
No one wants to go back to the era where a knitting needle was a teenager’s abortion. There is a definitive line between church and state. Whether this amendment is included in reform or not, I believe agencies that provide abortions will continue to be funded through the social welfare system.
Health Care and Social Welfare are two different pieces of a whole.
I, too, have studied how birth control and abortion talks relate to the health care system.
My very first experience was about 7.5 years ago when I started seeking an abortion for myself. I don’t think you are any more educated in the system than I am.
I can tell you that there is no feeling more desperate than knowing you are going to bring a child into this world with no means to care or feed it, not even being unable to breathe and know that you could be minutes away from dying.
I was lucky and relieved to have the ability to choose my route. During my pregnancy I had several friends who came to me with the secret they were pregnant. All had abortions. They all came from single mother, low income, inner city up bringing.
One of those women received her MBA. She bought her own home outside the projects.
Another went on to be a police officer in New York patrolling the streets of Harlem.
These women were able to be successful and happy in their own lives because they were given the choice not to have a child.

Taking away their ability to choose abortion takes away their ability to choose to rise above their upbringing.

And something tells me, though you oppose their decisions, you wouldn't be able to babysit so they could still accomplish their dreams of giving their children a better life than they had.
If you were available to assist, you would all ready be doing so, like my family does.

I was able to keep my child because I had a loving partner and supportive family.
The flip side, the alternate route I could have taken, would have been to have the child with no means of support, just like many of my friends.
I would have been given WIC, Section 8, and medical care, my child through healthy kids and I through Medicaid.
I would have been receiving tax payer support upon my diagnosis.
At that point, I not only would have been able to receive social security disability, but social security for my son, and social security income due to my lack of assets (anything under $4000).
This route would have had tax payers and hospitals footing the 2+ million dollar health care bill for my treatment.
There are many who choose to do this. In my experience, having the government assist in alleviating my health care bills through medicare has made my life easier and stress free.
I’m sure you are no more keen on supporting unwed mothers than you are on abortions.
I can only conjecture since you are remaining anonymous and telling nothing of yourself that your health care coverage must have been taken care of through your healthy husband or the state.

You must never have suffered the paralyzing fear of possibly having to stop treatment due to reaching insurance maximums.

You must never have worked through an extensive GI surgery for fear you would lose your job and insurance coverage.

You probably haven't woken up from a coma to immediately be greeted by a phone call from an insurance company dropping your coverage and charging $7000 to do it.

Otherwise, you would not be concerned with such pettiness.

You would be concerned that good people, even with insurance, do not have access to care in our current system, and that often, is a death sentence for them.
Please, in the future, focus on the living.
God in his infinite wisdom gave us all free will. It is not anybody’s place to judge our choices except his.
As Americans we must continue to allow and protect people’s freedom of choice, even if this means allowing others to make their own mistakes.
I’d prefer in the future that if anybody has an opinion they’d like to discuss that they identify themselves and remain civil.

And as for those 10 million who "may" lose their coverage in the future, there will be a safety net in place through a public option or government sponsored co-op that does not exist for the 46 million + working class poor that don't have coverage today.

Pitts-Stupak Amendment

WHOA, to the hater who thinks health care reform means tax payers will be funding abortions: The Pitts-Stupak Amendment enforces that government funded healthcare agencies or plans can not perform abortions unless deemed medically necessary or risk losing their funding.

Please check the facts and read the opposite view of yours at: http://abcnews.go.com/Politics/abortion-amendment-health-care-bills-ignites-debate-womens/story?id=9034995

This article worries that the inclusion of this amendment will interfere with a woman's right to choose.

Health Care Reform will not interfere with America's current system of providing abortions.

Tax Payers will not be paying and neither will insurance companies.

Planned Parenthood and Free clinics will continue to exist, and any person determined to have their abortion will be able to access them for an out-of-pocket fee based upon income as so many do.

However, hopefully with health care reform measures insurance companies will not be able to suddenly drop providers from their in-network providers mid-treatment, as happened with me when I was pregnant with my son.

I had started prenatal care in July only to be told in January my insurance no longer covered my Obstetrician or the hospital where she assisted in deliveries.

My due date was set for March, and being in college, my obstetrician had agreed to a "social induction" on the first day of my spring break so I wouldn't have to miss too much school.

Nursing Schools will fail you for one clinical absence.

I was forced to either change providers or pay the $1500 out-of-network deductible to have my child close to home with a group of clinicians I was comfortable with.

I chose to pay the $1500 to have the best birthing experience, but not every woman is so fortunate.

Now, how did that affect my right to choose?

The current system allows insurance companies to dictate where people can receive care based upon where they will reimburse costs for treatment.

If the proposed system was in place then, I would have easily been able to change to another, equally affordable insurance company that did cover my hometown doctor.

Since I was still under my parents insurance and this insurance was tied to my father's employment, I had no other option but to move or pay.

I think the Pitts-Stupak Amendment is the best possible compromise to this sensitive issue.

Update From Vic

Hi All
Merry Christmas and a Very happy New Year.
Hillary and Brynn decided their favorite color is Sparkle. A day in NYC will do that to you.
Things are starting to look like we may get back to normal. The day before Thanksgiving Nancy and Hillary had an appointment at Dartmouth to discuss the lung specialist results. She has 30% of a normal 28 year olds lung capacity. They really don't have a plan to improve that figure. Nancy really pushed hard to get them to get a new plan. Of coarse it's more medications but no steroids. The steroids would help but they believe that is why the cancer came back last time. Right now she is cancer free. She has appointments today and Thursday. She has been asked to speak on Wednesday for the health care Bill with the cancer society. She is trying to get back to normal too quickly. After all it is coming up on 4 years-- why rush??
I have attached some pictures from this last weekend. Nancy had to work in New York City. They negotiated a deal with the Waldorf Astoria on Park Avenue. We found out how the rich and famous live. I'm glad we are home!! I would never make it as a socialite!!! We had a great weekend. The most excitement actually came at the end of the weekend when we stopped in New Rochelle where Hillary went to College. We were greeted by 5 girls, Daisy. Kiki, Lorette, Collette, Yanellie, from her college days and some of their families, Chris, Isaiah and Victor. Her face just lite up when she saw them. They set up a phone tree just to say that Hillary was in town. They group looked like a U. N. convention. A very diversified group of friends of nationalities that had Hillary in common. Hillary has that unique way of collecting friends. Once you know Hillary you want to be a part of her energy and spirit and she makes everyone feel like they saw each other just yesterday.

I don't think any of them new how sick she has been for the last 4 months. She would not bring out the oxygen no matter how bad she felt. She does not want to show any signs of the sickness but the graft Vs Host disease is very apparent. Her skin color is the first give away. She has an eye specialist, lung specialist, cancer specialist and several more. She was able to just leave these issues behind and see the Rockettes at Radio City Music Hall and do shopping in China Town, Macy's to Sax Fifth avenue.
We plan to have a normal Christmas, quiet and healthy with lots of fun. "Life is Good".
I have been really down for the last 4 months and want to thank you all for carrying me through the tough times. I hope I can return the favor sometime. We appreciate all the great friends that we have.
Merry Christmas and Happy New Year
Vic, Nancy, Patrick & Grace, Allen, Pierce, Preston , Heather, Jon, Xander and especially Hillary

my favorite color is sparkle

Okay, I know some of you out there may disagree, and say that in fact, no, sparkle is not a color. I’m here to tell you it is, at least it is in New York. It comes  in all sorts of shades and variety in different intensities seen every wear from the Rockefellar Christmas Tree to Handbags and Earrings. Sparkle is definitely a color.It’s Brynn’s new favorite. Maybe NYC was not what the doctor ordered.I think that’s a little beyond there spefications and scope of practice, but if they knew what I know, they’d be prescribing it all over. In-vitro fertilization vacations are proven to be 48% more effective in achieving conception than when couples try to conceive during the hum drum of daily life. It’s only a matter of time before health care recognizes this as a universal rule and begins to turn far away hospital stays into vacations. Boston's brigham and womens has their pavilian. The Klinik Im Alpenpak all ready has upped the ante on his trend.The hotel, which houses a spa, professional chefs, and an olympic size pool, collaborates with health care professionals. You are “prescribed” certain activities of daily living to compliment your therapy. Cure rates are inceased, but those who are not cured report an improved quality of life. What’s this mean? It means they’re probably dying, but they’re having fun doing it. They're lyinh in the gutter but staring at the stars. So who would prescribe this for me? That would be two loving parents who hooked me up with one fabulous trip to NYC for Christmas. Thanks mom and dad.We all know that I have never been as happy and alive as when I was  in college and knew for a fact that the world was mine. Now going back to NYC during Christmas poses a challenge, because as much as I like running around Saks and Macy’s to check out the windows, shopping on Canal and checking out the shows, I’m really there to see my friends for the holidays. And our families just keep growing and expanding. It’s like going home.

think I should have prescribed myself a nyc wkend a while ago. It's just what the doctor should have ordered. I had started looking around my country town and thinking hmmm... Maybe I should start looking like them. I don't even know where I get this style from and all I do is stick out. Well I actually look perfectly at home in manhattan. There was a time I strived to look like a fashionista manhattanite. Guess what? I've made it. I'm perfectly comfortable being me here. I also once wondered qwho those peope wqere speaking at the podiums at rallys *nd protests and thought oh how cool I want to be like them. Low and behold I can check that off of my things to do list to. Now that I'm healthy0 enough to leave my house ill start speaking again on weds. I'll bw doing an "ambulance tour" which is a media campaign for health care reform that entails trucking all over the west side of nh (from keene to hanover) and speaking to all local outlets. The goal is to re boost interest un health reform as it jas stalled in the senate.  Unfoetunately itts going to take more than a couple of interviews to reignite interest. With my neqfound energy, I have ideas though. I think it's time to hook up with Linda and Co. At the huffington post and finally make my u-tube commercials with all my videos.   Really, a girl shouldn't be stalked for her signature to assure I'll be paying for treatment when she can't breathe. That's just wrong. Patients should see their doctors more on intake than the admitting secretaries, especially if they're battling a life threatening problem at that very moment, but that's not how it works. I need to verify I'm financially responsible before I get assistance breathing.   Maybe it's time to open up my medical records and billing information for proof. I certainly have enough to prove what a huge mess the system is, I just don't know what to do with it. Who wants it? Any takers? It's all organized. It's semi-interpreted.S

I woke up this morning, woke my son up, and immediately proceeded to gag like I was going to throw up on him.

Some kids get alarm clocks, my son gets mommy vomiting sounds as a wake up call.

X took this as some sort of wake up challenge and immediately showed me that he too could fake a serious vomit, gagging but not quite throwing up.

GGRRRREEEAAATTTT.

This is what X has learned from me: how to be an alpha faker.

I see his Munchausen’s diagnosis in the future.

For now though, there are a few things this six year old knows. He knows there are two symptoms that will immediately get him out of attending school: throwing up and/or a fever.

He’s all ready started to try manipulating the thermometer. He knows normal is 98.6, but anything under 100 doesn’t count.

He tried so hard to get this reading the other day he broke our thermometer.

If he knows the symptoms and is this determined in the first grade to trick us into letting him stay home, I can only imagine what’s in store for our future.

Hopefully, I’ll stop throwing up every morning and he’ll forget what it looks like so he can’t fake it so well.

Let’s cross our fingers and hope this morning sickness is just a phase my body is going through, just part of H1N1 hanging out and not GVHD.

Until that determination is made I’ve been hitting up my marinol.

There is a reason why people just won’t let the legalize marijuana campaign go, and that’s because THC is effective for appetite stimulation and as an anti-emetic.

It actually works, but silly stoners, if you really needed it, you’d be getting it prescribed in pill form just like I am.

That’s legal enough for me.

Unfortunately, that didn’t stop me from throwing up in Walmart that other day.

I told J I was sick. I told him I wanted to go home and take a nap. I told him I was going to throw up.

But he just had to test it.

I know those minimum wage employees who clearly saw what I had for lunch twenty minutes before wish he had listened.

I don’t think he’ll be ignoring me again.

Despite my little problem of throwing up with little warning and for no good reason in public places, I’m still taking off to NYC for the weekend.

I’m a little apprehensive.

I had to unpack my hospital bag from my last stay to make room for my clothes for the weekend.

I guess it hasn’t been that long since I was an inpatient.

Worse, my body has started threatening to send me back.

My GVHD started to flare up on my skin.

Graft vs. host is interesting. I don’t know any other ailment that can burn a person from the inside out, but that’s what’s happening.

I got undressed to change into my PJs last night and whoa, burns, boils starting.

They start as little red marks and then turn into what looks like a blister before growing into what appears to be an all-out burn.

I fell asleep with little blisters and woke up with little ulcers. My skin is all ready trying to break wear my bra and underwear meet my skin.

Nasty little life threatening disease.

I keep telling myself I’ll be fine for the weekend.

It’s not a big trip. I’m going back to my old stomping ground.

We’re seeing the Rockettes, like we did every year while I was there.

We’re going to Radio City Music Hall, which is nothing more than where I had my college graduation ceremony.

Yes, I did get to walk across that stage, but somebody on high decided to separate me from my friends before we got to it.

I think they may have been trying to avoid “a scene,” but isn’t that what the stage is for?

I have planned my time to include naps if I need them, but still I know how exhausting everything is to me.

That, however, doesn’t matter.

I’m getting my game face on either way. We’re seeing the Christmas Spectacular. We’re shopping on Canal and in SoHo on Friday. We’re lunching in Little Italy.

On Saturday we’ll hit up Saks and Macy’s.

I will remember that the Empire State building is a tourist attraction and not just my old Dentist’s office, and point it out to Brynn.

Then, maybe, depending on how I’m feeling, we’ll hit up the club on Saturday.

I will not drag Brynn up to my friend’s places in Harlem. I’ll save that for next time. This time, we’re going to cozy up at The Waldorf.

I’ll keep you posted on my adventures, and now for some good news.

All future allo-transplants, listen up. New research has discovered a Blood Test Predicts Bone Marrow Transplant Complications, specifically which patients will develop GVH.

A simple blood test that may allow doctors to detect and treat bone marrow transplant complications up to two weeks sooner than is currently possible has been developed by Australian researchers.

This new test is designed to help doctors predict which patients will get graft versus host disease (GVHD), a complication that occurs when transplanted marrow attacks the patient's body, theAustralian Broadcasting Corporation reported.

GVHD is a problem in 85 percent of bone marrow transplants. The earlier it's detected, the easier it is to manage and cure.

The new test checks for levels of active cells in the blood called dendritic cells. The more dendritic cells, the greater the risk of developing GVHD.

"This is the very first time that we've been able to, in bone marrow transplantation, predict, before it happens, which patients will get acute graft versus host disease," researcher Prof. Derek Hart, director of the Mater Medical Research Institute in Brisbane, told the ABC.

The research appears in the journal Transplantation. The new blood test will now be tested in a two-year international study.

Having your lungs fail feels like taking breaths, breathing, but having your body forget what it has always has known to do.

Suddenly, what has always been instinctual becomes work, and all the work you do does not do anything.

Your basic bodily instincts no longer work, and in your desperation you just hope and pray that your own determination will somehow makeup the difference.

You force your body to do the mechanical actions. You have to think and concentrate on taking breaths in and out, in and out, and even with all your efforts trying to survive, those breaths fail to work.

There is no guarantee that your lungs will receive the air you so desperately want. Breathing is so much more than taking a breath. It’s a dynamic, physiological process that requires the breath to be accepted and processed by your lungs, allowing the oxygen to diffuse into your blood.

It’s like taking a breath and breathing in half way, never, ever being able to attain that second deeper breath of oxygen that actually allows you to function.

It’s possible to survive, but it’s not possible to live.

There Is a difference.

It should come as no surprise that I’ve been pretty motivated to fix these problems since my biopsy in October where I ended up begging for pain control, home oxygen, and a heme consult from a soon-to-be surgeon that just didn’t get my problems had nothing to do with his incision, and that despite this fact, my problems were very, very real.

F***ing narcissist.

So why does my doctor finally decide to sit me down and announce my graft vs. host disease and it’s symptoms are life threatening yesterday.

No sir, my GVHD was not threatening my life yesterday. It has been threatening it for months. By yesterday I finally had gotten around to coping with this fact and moving on.

Luckily, today I've finally gotten some singulair on top of my zithromax, and hopefully, a nebulizer for my aerosolized steroids on it's way.

I also have an extra $90 in co-payments to front each month.

There is a simple way to erase this extreme payment, and that would be to admit I have severe, systemic GVHD and take some prednisone.

However, I would lose the graft vs. host anti-cancer benefit by doing this.

My choice, essentially, is which disease I would rather fight.

I am voting to fight my graft vs. host disease.

I've always been morbidly interested in GVHD. I feel I am sufficiently educated in it's symptoms to, at the very least, know when it's about to kill me and have some decision making capacity regarding its control.

This route is more complicated and requires more monitoring.

I'm willing to take my chances with the GVHD over the chemotherapy.