Vaccine Day: Guess who's 12 months?

My favorite wacko theory regarding the sudden massive deaths of blackbirds in Louisiana and Arkansas:

 "It's those racist green energy wind turbines! They have to be racist... they only killed blackbirds.... in Arkansas no less! and I bet the wind turbines were white as well!" -cg68doc

I thought I'd hit a writing rut all ready. 

I thought I was getting boring and uninteresting. 

Maybe I am. 

I can only hope. 

But then again, maybe not. 

X played with Andy over the weekend.

 For those of you who are new, andy was x's 1st grade best friend who was diagnosed with leukemia last Feb. He underwent a "so far so good" bone marrow transplant at Boston Childrens. 

Now, He looks so cute! He grew during his treatment (growth can stop completely) and his hair is black and curly!

 It was great to see him looking like a growing school age boy.

He had his port out and quickly whipped up his shirt to show me that he didn't have it anymore, and then, I showed him (without whipping up my shirt) I didn't have mine anymore. 

I have to say, I really have a special love for Andy. I'm so happy to see him doing well.

He is even well enough that we can start doing play dates back and forth. We talked about starting this Friday, but he's headed to Boston, so maybe not.

 Then his mom tells me he's going to Boston friday to get his vaccines!! 

Wait a second!

I don't even have my vaccines. 

I have nothing. No chicken pox. No pertussus. I could die whooping it up (from bordatella pertussus or whooping cough). 

I don't even have my pneumonia or flu vaccines! 

And if there is a time to get them, it's now after my sabbatical from chemo. I'm almost the healthiest I'll be.

So I decided to get the ball rolling with my heme team Dr. G. DHMC finished writing their post-transplant vaccination protocol recently, and I get the luxury of testing it out.

DHMC's transplant department is relatively new (in the past 10 years). Currently they only do auto-transplants or perfectly matched allos. Not all Doctors have experience with allo transplants or graft vs. host disease, but they have been fabulous in meeting my needs if or when a problem arises. So they haven't really needed a protocol before, but as of today, I, too, will have my 12 month old shots. 

And for those of you who haven't been keeping up with the medical world, I'm getting them with the newfound, scientifically proven knowledge, that I will be safe and will not contract autism from them and neither will your little one.

The leading scientist showing a connection between vaccines and autism has been not only discredited, but lost his license to practice over the fabrication of evidence in his scientific trials. 

Staying on the wagon: How I'm recovering from Lung disease

You never know when the last time you do something will be.
You don't visit a friend thinking, "Well, I won't be coming here ever again. I should really look around  and enjoy each moment, the smells, and the sounds."
No one ever goes to their hobby room on the second floor to wrap presents or sew or clean and think, "I may not enter this room again for years. I may live in this very house, but getting to the the second floor will be as hard as crossing the Sahara desert."
But this happens.
Everything is left mid action, a shadow of a ghost that once actively played there. The room, the house, or even a desk is left telling a story of an unfinished project or a goal that was left unmet.
But no one ever knows when that time is coming. There is no way to prepare.
I didn't realize in August 2009 when I first started to experience shortness of breath that none of my activities would ever be the same afterwards.
I remember wanting so badly to coach soccer. I got out of my chair and showed one girl "hot touch" on the soccer ball, quickly jumping from foot to foot and placing my toe on the ball.
I stopped quickly. I felt my chest getting heavy and my throat closing in. I started to sweat. I started to see black and quickly sat down, thinking, "I absolutely can not pass out in front of the kids."
I didn't know then that I would not exercise for years afterwards or that "exercise" would consist mostly of rehab with small babysteps.

Bronchiolitis Obliterans with right sided pneumothorax
post bone marrow transplant.

 First, I had to overcome the immediate threat to my life with scans, biopsies, a pneumothorax only to finally diagnose bronchiolitis obliterans, or graft vs. host of the lungs from my second transplant, then I had to gain the strength to breath pain free, to cough, or laugh. I'd gone a long way from playing soccer.
I used to dance almost every night through the first years of my cancer, not only to exercise, but to keep my spirits up.
 With my new struggles, I had to start learning to walk with an oxygen tank at a pace I could sustain. I had to manage getting to the car. I had to learn to manage getting my son ready for school. I had to ask and train him to scrape the ice from my car.
I could hardly lift the 10lb. oxygen tank. I could barely lift my legs in the boots I'd worn for years.
I guess you could call this "exercise," but not by my definition.
I tried to find other hobbies to fill the void. I took a pottery class and threw myself into art, but even when still suffering from severe bouts of respiratory distress I'd push myself to at least pitch to Xander or pass the soccer ball. None of my new activities appealed to him like the sports we used to play, but the days of jumping on the trampoline or teaching him ball handling skills were over.
Or so I thought.
Today I FINALLY, after years, brought out my old "Flirty Girl Fitness" video! That is bonafide exercise, even though I didn't even complete the warm-up.
It's been a long road and a struggle that consists of more obstacles than just my physical problems from cancer, chemotherapy and bronchiolitis obliterans.
I had to face the psychological fear of losing control, losing my breath, having the world turn black and losing my faculties, possibly in front of my child, but I knew it was my only hope to enjoy life the way I wanted to.
The road to recovery began when I'd finally started to accept my state. I'd purchased a wheelchair. I bought a better bag to carry my awkward oxygen tank along with my medications and money, etc.
I knew I had farther down to go. I didn't want to go there.
With X as my motivation and an excited blessing from my pulmonologist and transplant specialist, who both said exercise maybe the only way to improve my functional activities, even though it would not improve my test results, I started slowly.
X and I would play "wall ball" kicking a soccer ball against the side of the house. I would walk slowly and kick then sit on the tailgate of my jeep. I didn't run, I didn't chase. If the ball didn't come directly to my feet, I would leave it.
Two kicks at the wall slowly turned to three then four. Then I started to take a couple steps sideways to move towards the ball, walking in a careful calculated manner. At this time I would start getting short of breath, but I'd stop and regroup.
I began to force myself to walk longer distances knowing that at some point I could reach exhaustion and collapse. I learned to take my body to a point I was comfortable with and then rest.
After a month- 6 weeks I could finally kick back and forth with some strength and I added a little hop to my step.
The first time I tried to "run" to the ball (that's means taking two quick, strong steps towards the ball) my leg gave out before I could make contact. I fell flat curling to avoid injury, but got up laughing.
I stopped for the day. I took a couple days off, but I got back on the band wagon.
I finally got to the point I could add a hop to my step. After 3 months, I could walk quickly. I could hurry without fear of passing out.
It was about this time I walked up my stairs to the second floor for the first time in years. I walked up and I did it without breaking into a cold sweat, gasping for breath and collapsing at the top. My legs felt like jelly. I felt shaky, but all of those old terrible feelings were trumped by my accomplishments.
 I started to work on my strength the beginning of June by doing things I enjoyed and wanted to do in everyday life. It was early October before I accomplished my one flight stair climb.
I'm proud I was patient with myself, that I listened to my body, instead of trying too much too soon and hurting myself or quitting from frustration.

I've always been a woman that enjoys activity. It relaxes me and energizes me in one. It allows me to focus and clear my head, leading me almost to a meditative calm so difficult to achieve during a battle with cancer.
Along with losing my breath I'd lost one of my few outlets, and now, with it returning, I'm again remembering the good it brings.
 Soccer season had to end eventually. By this point, my legs had regained a significant amount of strength, but my arms had been ignored. The first day X and I went to the driveway to play basketball I lifted the ball to shoot only to watch it float uselessly, not only below the rim, but below the back board.
AIR BALL.
X thought I just didn't know how to shoot and launched into a full scale lesson on proper form not realizing I was about to burst into tears.
"DAMMIT." I cursed,  "I was damn good basketball player and now my child thinks I don't even know how to take a proper shot. How am I supposed to teach him the moves I've been planning on. How will I teach him to dribble, to do his cross-over? How about hook shots and backwards lay-ups?"
 I wanted him to know how to dance with the ball and I wanted to be the one to teach him.
Again, I parlayed my sadness into motivation. After a week I could finally hit the backboard while shooting. Soon I was making close shots. Then it was on to lay ups.
This time though, unlike my early exercises with soccer, I was able to move my feet. I was able to run a little. And by mid-December I was able to teach him how to dribble fluently with both hands. By Christmas he'd perfected his cross-over and just yesterday he tried to pull out the behind the back cross over while playing.
All the while he thinks we're playing, I'm working to strengthen myself. I'm working to gain energy so I'll be able to participate in his life as long as possible.
I'm finally to the point I've ditched the oxygen.
The wheelchair is packed away. People have begun to forget that I even have lung issues, but I remember and hope I will always remember the excitement I felt when I could finally take a pain free breath or walk without losing my breath or go into buy milk for the first time.
 By celebrating each small accomplishment, by listening to my body and it's cues, I was able to manage my severe lung fibrosis and chronic obstructive pulmonary disorder. Now it's on to more activities and a happy, healthier, easier life.

We can't live healthy on a sick planet

Of course, it had happen to children in undeniable amounts of suffering before the national media paid attention, but it has.

A cancer cluster has been identified in the small farm town near Clyde, Ohio. Thirty-five children have been diagnosed with brain cancers, leukemias, lymphomas, and other forms of cancer there since 1996- all within a 12 mile radius. Eight children have been diagnosed since 2002-2006.

See the facts and article yourself:

http://www.msnbc.msn.com/id/40855275/ns/health-cancer/?gt1=43001

This sounds eerily familiar to me. Claremont, NH physicians petitioned the legislature in the early millennium to research the air quality and the incidence of cancer in the city after suspecting cancer clusters in certain areas of towns. The Doctor's theorized it was due to air pollution from recycling facilities and a garbage disposal plant located along the border of Charlestown and Claremont.

The study was done. Carcinogens were found in the air.

But no cluster was identified.

But the study was not done within a radius of ground zero, or what I like to call "Clarenoble." It was done in Claremont, which lies to it's north.

Immediately South is Charlestown, NH, which was not included in the study.

A mile south is my property where I've grown my entire life. I was diagnosed with Hodgkin's lymphoma in 2006 at the age of 23. To survive I requiring a bone marrow transplant.

Three-fourths of a mile south on River Rd is the former home of Carol Snelling. She was 53 years old when she was diagnosed with Leukemia in 2007. She passed away while undergoing her bone marrow transplant.

Also  in 2007, 21 year old Ashley Jordan thought she was finally headed to college from her parents home in Charlestown 1.5 miles south of the plants. She had to postpone her plans when she was diagnosed with Hodgkins Lymphoma, a disease that hits only 8000 people yearly, but somehow managed to attack to young woman within a half mile of each other. She also had a resistant form of the disease that required her to undergone bone marrow transplantation.

I'd like this to be the last person on this list, but we haven't gotten to Andy, my son's first grade best friend. HE was diagnosed with Acute Lymphoblastic Leukemia, a leukemia rare in children, after leg pain forced him to see a doctor. He was immediately hospitalized and underwent bone marrow transplant at the age of 6. He lives less than a mile south of Clarenoble and less than a mile from me.

I think we have a cancer cluster here too folks. But who are the illusive researchers that have dug under every work and sampled every specimen to come up empty handed? And how do I get them here?

Our states' epidemiologist has shown little interest.

I know if this was a random killer, a person, that had attacked a middle aged woman, two young woman, and a child over the course of four years within a mile of each other the state police, possibly the FBI would be involved.

There would be outcries. There would be letters to the editor, picketing, and fear. The national news would catch on and headlines would scream about a peaceful NH farm town under siege by a phantom killer whose motives are unknown and who has no pattern of selecting his victims.

I now look at children growing up here. I look at my niece, my son, and neighbors and guess which one will be next. I think, "well, he had a viral reaction the same time I did before I was diagnosed with cancer." or "she had mono with subsequent chronic fatigue" and on and on and on about who may get hit next.

But I can't get anyone to do anything.

I have not included other cancers diagnosed during this time frame within a 12 mile radius, but it includes others who have required transplants or lost their breasts or portions of their intestines before age 30. These people include Darcy Gauttier, who was diagnosed with a brain tumor in her early 20s while living 1.5 miles south of the possible culprit.

Luckily, She has since recovered and gone on to become a mom, but how many others will suffer and die or never be able to bear children or never realize their true potential because their lives were snuffed out prematurely by cancer?

I've heard our area compared to Ohio before in another context. It was during a study of acid rain that showed toxins from facilities in NY and NJ tended to follow air patterns that allowed the air pollution to accumulate dropping acid rain in both NH and OH.

This acid rain was the possible cause of similarly mutated frogs found in both states. These frogs would grow two heads or six legs or one eye.

Hmmm, acid air? Air pollution? Could that be harmful?

It is all ready proven that some pesticides, like DDT, cause cancers. Atrazine, which has been banned from France and in the European Union in 2006, is still widely used in the US today even though it is a known carcinogen with xenoestrogens so strong it can change the sex of frogs. 

 I think a separate similar study should be done in our area and then cross-references with the research from this Ohio town to find similarities.  If similar clusters are identified and like qualities determined we will be closer to determine the cause of the diseases, the point of origination, and wouldn't it be beatiful to finally know what has caused these cancers?

We all make mistakes. Remember to play it safe.

I caught myself using my belly as a shelf for the first time EVER.
A year of prednisone, a year of taking a bonafide fat pill that causes adipose tissue to accumulate not only in the belly, oh no, but at the base of your neck.
For some people their holiday cookies go straight to the hips.
Mine, go straight to my face.
I guess it's going to be one set of cheeks or the other.
How am I going to hide that?

I'm going to wish for some good body image for the New Year.
And then continue to taper my prednisone to keep the bad side effects at bay, like my fuzzy cheeks, yes, the ones you can see.

I thought Christmas started coming a day early: first, with me finding the perfect outfit THAT FIT right in my own closet, a pair of size 10 Ann Taylor Jeans and a red button shirt I bought mid-summer, both nearly new, then Jon came home from his annual day-before-Christmas-shopping with a Sony cyber shot camera FOR ME to replace the previous early Christmas present, an even better Nikon Cool pix, that dropped and broke the second time we used it.
YAY, yes, I had my own camera of my own for Xmas. 
So I had a great Christmas, but here is the disclaimer:
Everybody, if you have children, a rowdy or adventurous life that includes outings, activities, and travel the Nikon Cool pix is probably not for you.
It is not real life user friendly. It can't be thrown in a purse and make it out on the other end okay.If you are a photographer.... If you baby your tech equipment.... If you will be using it in a controlled setting.... then the cool pix could be for you.
But if you're living the lifestyle it shows in the commercial with Ashton Kutcher at a party with a pool, drinks, and hot models, that camera is not for you.
Now, reality has kicked back in. I replaced my Christmas outfit for my stretchy pants and kept wearing my stretchy pants until I finally stepped on the scale after the holidays to discover. . . 10lbs.
Oh well.
Next Monday I restart therapy with a 6:45 am medi-port placement before chemotherapy.

13 Items to Organize "Just In Case"

13 Items to Organize "Just in Case"

So your husband, the love of your life, has just died suddenly in a motorcycle accident leaving you heartbroken with a fatherless family. Is he going to leave you scrambling and confused when the bills come in too? Will you easily be able to access that life insurance policy your sure he has or is he going to leave you broke? 

After attending to the details asociated with planning a funeral (since no one gets around to prepare for THAT until at least their 60s or 70s now), smack dab in the middle of the worst grief of your life, it's time to sort through your finances to make sure you and the little ones will also survive. Now if you could just find those bank account numbers. . . 

In our invincible culture where death to many has become a "disease" that should be cured, very few of us take the time to plan and prepare documents to ease the burden of our loved ones "just in case."

I'm guilty. I'll admit it. When J and I married and left X with my parents during our honeymoon, my mom insisted on a document typed, signed, and notarized stating they would become the legal guardians of X should anything happen to both of us.

That was the only peace of mind she asked for. It was the only one she received.

Even when I was diagnosed with cancer I resisted. I did fill out a Durable Power of Attorney immediately for fear that my family and my husband would go to war over healthcare decisions if I could not make them. But this was more to avoid disaster than to provide anyone with peace of mind.

It took three years before I actually made a will on legalzoom.com and then another 6 months after I received it to actually sign it.

Is my will in a secure, well-known location? 

No.

It's hanging around with some other mail I need to organize sometime, somewhere. 

I have, however, managed to create a document listing all my accounts and how to access them. I do fear that some of my assets will go unaccounted for and end up in the great abyss of the states' undeclared funds either for lack of understanding how to obtain them or a lack of desire to do so. But at lest it's very useful for me now. I always now my accounts and passwords.

Through the years I've come to recognize leaving our loved ones with the information and details that they will need in order to manage the future is a tremendous gift.　

Below is a list of things that will be helpful to collect for yourselves and your loved ones so that they can feel securein their lives and their future when death comes. 

The last thing they'll want to do then is dig through my desks and files looking for the answers.　

This proactive effort may be as simple as writing the information on a piece of paper or  organizing a sectional binder. In this day an age, it could be set up on your computer, just remember to leave the location of the information and password to unlock this document somewhere obvious.　

Here are 13 Must Have Items to Collect and Organize "Just in Case."

1. Funeral Director, funeral home phone numbers, cemetary and plots if known and purchased.  

2. Attorneys, Accountants, Financial planners, Executors of Estate Names and numbers of those you hired. List the reason these relationships were important and the documents, investments created and where these documents located.

3. Insurance Names, phone numbers, policy numbers for life, health, home, etc. If it's through a corporate account, the name and phone number of your contact in Human Resources may be helpful.

4. Bank Accounts This is the time to divulge any secrets! List the location, type, numbers and passwords, etc.

5. Social Security So much of what we do in life is linked back to our social security number. Clearly write out your number, as those you leave behind may be entitled to further benefits.

6. Work-Related Policies Life Insurance, 401k, Health Insurance...If something happens to you, what department at work does your loved one call & what are the details of your arrangements there?

7. Bills This area of our life is never cut and dry. List out your bills, automated payments or deposits and any special situations you have garnered.

8. Vehicles There are two cars parked in the driveway and you just helped buy your grandson’s! Title, maintenance, insurance & anything owed on all of your vehicles. If you have purchased a warranty on the vehicle that information should be included.

9. Credit Cards And you most likely don’t have just one! Names, numbers, pins, passwords will all be helpful and don't forget websites with log in codes if you've done on-line banking. One great place to organize these and help realize life time financial goals is mint.com.

10. Financial Documents Of course, the financial planner will be helpful with some of this and you may have had your hand in more than one pot. List all independent investments of stocks, bonds, titles, retirement accounts, etc.

11 Safety Deposit Box Always a mystery, these treasure chests! List the Location and address, number of box and where the key is to open it.

12 Home Mortgage & Real Estate Investments All relevant information should be compiled with names and numbers provided of any professionals that have helped in these transactions.

13 Material Objects If you have not indicated in your Will, how would like your stuff distributed? Your nice watch, your favorite piece of memorabilia and your golf clubs could be a sweet way to recognize your loved ones.

This is important to everyone. We can all get hit by the proverbial bus on the way to work this morning. It's especially important that even when facing a life threatening illness to remember that life will go on after without you. It's so easy to overlook what will happen when you're facing an immediate crisis. organization would be a great gift to the ones you love to make the immediate aftermath as easy as possible. At the very least, make out those Durable Power of Attorney documents giving  someone charge over your care if you can't speak for yourself.

Never say never and other words of wisdom

A New Year Prayer

"God, grant me the senility to forget the people I never liked anyway,
The good fortune to run into the ones that I do,
And the eyesight to tell the difference."

Never ever say never, ever.

Never say never because that line in the sand gets erased and pushed back. Situations change. There is no telling what the future has in store, and No one knows their potential until they meet their match.

I never ever in a thousand years thought I would just want a quiet, normal, event- free new year. 

But I do. 

It was only a few years ago I thought ordinary was the enemy, because if you were ordinary, then you couldn't be extraordinary. I feared the monotony of routine and worried about sinking into the humdrum lifestyle of a rural mother, having one day blur into the next with very little to distinguish the two.

Now, what I wouldn't give to be "normal", "ordinary," or "boring" even.

I've been working out what I've learned over these past couple of years, mostly to pass on to X or Lex in the future, but today, I feel like cueing you all in.

Here are a few other things I wish I'd known:

Hill's Words of Wisdom

Where ever you are, what ever you are doing, enjoy it, if
only for the experience it is.

DON’T LET YOUR PERSONAL problems INTERFERE WITH your
professional life and don’t let your professional life become a personal
problem.

When in doubt, don’t.

Learn to control your emotions or they will control you. 

When fighting, remember, it is not about being right, it’s
about being happy.

Establish yourself so you can live comfortably
independently. You never know what will happen in life, and it’s a great
feeling knowing you can succeed on your own.

You can be independent while having loving relationships.

Before seriously dating, know exactly what you want from
height, build, family background to talent, Education, and work status. If you
go shopping without an item in mind, you’re likely to bring home something you
don’t like and want to return. The same is true with dating.

You’ll never get what you want if you don’t know what you
want.

Make what you love to do for vacation your vocation and
you’ll never work a day in your life. 

Know the difference between needs and wants.

Know your means and live within them.

A penny saved is a penny earned.
 
Make your money work for you.

Follow your heart, but still listen to your gut.

If you are questioning whether someone is a true friend or
not, they’re probably not.

Be civil and friendly to everyone, you never know what
position you all will be in one day.

Grudges, anger, jealousy, and hate do more damage to your
self than the person the feelings are aimed towards.

Forgive AND FORGET.

Never stop learning. Read books. Take classes. 

Take chances. You miss one hundred percent of opportunities
you don’t take. 
It’s better to have tried and failed than not to have tried
at all.
It’s better to have loved and lost than never to have loved
at all. 

Treat others the way you want to be treated and the favor
will be returned.

Never say, write, text, film, etc. anything that you
wouldn’t want hollered down a full hallway or written across the front page of
The Huffington Post.

Think for yourself and act accordingly. Dance like nobody is watching. Sing like nobody is listening.

Nobody becomes successful by himself or herself. Embrace
others offers to help. It's a strength to understand your interdependence with others. 

Help those you can.

Learn to love spreading joy, even if it’s just through a
smile. It’s proven spreading a bad mood by yelling at someone does not make you
feel any better and it hurts someone else. 

Always ask questions. Curiosity is the spice of life.

And of course, never say never.

Dr. Hillary Prescribes "Herbal Gleevac"

Aww Stony, I knew you'd hit on something I've been meaning to talk about.

Yes, I've used and prefer my marinol the old fashion way. I am a full on support of marijauna for medical purposes. I, once, belieed that the "legalize marijauna" movement was just a bunch of hippie stoners looking for a way to protect their favorite pass-time.

Having suffered long and hard, I now know for a fact it relieves pain, anorexia, nausea, and vomiting like no other medication possibly can. It also doesn't have side effects like dyskinesia, which are Parkinson-like twitches that can last for life. I can't take most commercial anti-emetics because they cause dyskineasia.
That side effects is scary as hell.

 I'd like to get high. My severe lung issues: lung fibrosis from radiation and bronchiolitis obliterans (GVHD of the lungs from my allo transplant) won't let me.

I've just started walking up stairs again after years of being unable. I get pneumonia upon pneumothorax. Just a few months ago I was going into respiratoy ditress so badly walking five feet to my care I would wet my pants.

So no smoking for me, which means I need to find a way to eat it and enough of it to do its job.

 Its kind of hard to down brownies to treat not eating, vomiting, etc.

So I've been thinking....
I know, a little scary, that maybe I could turn it into a dipping oil for bread.

 The problem with cooking weed is you need something like oil or butter to extract the active ingredient (THC). If you don't do this your just chewing anyother weed.

Then I could dip bread, which I do eat, into it or pour it onto rice, which is also easy to ingest.

And I'll up the ante by adding herbs to the olive oil.

In the book, "The Anti-Cancer" there is a suggestion for the herbal equivalent of gleevac.

 Gleevac is America's most recent promise drug for cancer patients. Its a chemo therapy pill that allows people to live virtually normal lives with cancers such as leukemia. One writer and editor at Elle magazine was diagnosed with leukemia in her late teens and now in her mid-twenties is looking to having children while taking the drug, but these meds all came from ideas in nature so I'll throw these in:
Parsley, celery, mint, thyme, marjoram, oregano, basil, and rosemary.




I don't know exactly what amounts of which herb will work best. I put most my faith in the parsley, which has shown up time and time again in literature, as well as oregano and thyme.
I'll let you know how it works out.
I can whip this up for next time aka Jan. 10 when I get my medi-port placed and resume treatment.

Thank you everyone for commenting and reading. You remind me why I started writing. I'm excited and hoping I'll have the energy and strength to keep writing. I think that should be my artistic focus and my hobby.

 Last year I didn't feel like myself with the steroids. I felt crazed and confused. I feel like last year was spent in a foggy cold sweat that I'm finally emerging from.

I've been thinking a lot about my past therapis and how they relate to my current state.

I have taken SGN-135, the new"It" drug for hodgers that looks like it may give them a chance to have cancer without disease.

I took it at dana farber in the summer of 2008 during Phase I to establish proper patient dosing. Phase I means never been tested on people. I had a Level 4 reaction. That means a tachy arrhythmias, severe dehydration with electrolyte imbalances, cardiac abnormalities. I had to be spoon fed gaucamole by my sister.

Level Five is Death.

I think it was determined I received the dose for a 300Lb man but that's what happens with trials.  Not all trials offer participants a nice easy ride.

It did send me into remission, which we knewit would, because everything sends me into remission.

 I was a total lab rat and allowed it because I knew it would be great for others in the future.

I used to cry remembering my view of "kill one to save a thousand" when I was a healthy practitioner, a wannabe future researcher, but now I'm thankful for the time it has given me and the ability to help others in the future.

 I think I have access to the very best trials with Alyea at Dana Farber if that's the route I want to take.

And I would want that trial to be for a cancer vaccination.

See, I also know exactly what study I would try to finagle myself into. I have contingency plans upon contingency plans. I was on Plan Y (do everything possible to stay alive) two years ago but it's working out.

My priority is being close to my family and having as normal a life possible here.

GVHD Eye trial

Thank you everybody who share their ideas ideas, suggestion, etc.

I am now starting a trial, an unexpected trial, for my left eye.

Unfortunately it's an off-label use drug trial, not a clinical trial that the company pays for and not something insurance will cover.

Imagine the shock when I saw this sign at the pharamcy.

Thanks to you who have donated to my medical costs. You've eased the burden of my new $150 every 3 week medication.

 I'll be using the medication in my left eye only with the right eye as a control.

When Dr. Jon first looked into my left eye a sudden heavy silence fell over the room.

I know this silence. I'm too familiar with it.

It's the "Oh, that is baaaaadddd." Silence.
It's the "i-need-to-get-a-good-look-and-think" silence.

Dr. Josh took his time and I sat fidgeting wondering how bad it was.  When he rolled back to his desk he started immediately talking treatment.

This is what I like: options. I had severe dryness, inflammation and irritation or GVHD of the left eye only. We plugged my upper tear duct to lock in moisture. He wrote a script for azythrmycin eye ointment to use as an eyegel.

You know if it's bad on the cornea research floor at Mass Eye and Ear its bad. He said I may be a candidate for a special eye patch, but Dr.Dana had put the cabosh on contacts years ago due to infection risk.

 I am the perfect candidate for this trial. Dr. Jon verified I had tried everything else possible including: photopheresis, prophylactic doxyclyxline, artificial tears, twice daily hot compresses for 10minM flax seed oil, fish oil, restasis, eye plugs, RX contacts, eye flushing and on and on.

I knew what was coming. Dr.Dana has been after me for this trial forever, waiting for the perfect conditions where not only would I do the study, but I would pay for it. The time came.

Eye pain is the most excruciating followed by lung/rib pain then by abdominal pain. That's my opinion based on my experience.

As a perk, I do get upped to a special, priority patient status with the eye guru himself. I think if I had asked and resisted the trial from fear, I could have finagled his pager number, if not a cell or home phone number for access to the best eye care anytime, as an incentive to get me to sign on, but I did anyway.

After the new plug, the removal of the microfilaments, and two doses of the drops I'm feeling relief, but time will tell the rest.