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.

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.

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

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.