Farrah Fawcette & ME

Sorry I have been slacking. I have been busy, busy, busy. I need material to transmit.
First things first, the doctor I have been speaking with in Germany is treating no other than. . . . .drumroll please. . . FARRAH FAWCETTE!!
Yes, Entertainment Tonight, my source of news, confirmed that Dr. Ursula Jacob is treating the angel in Los Angeles.
Dr. Jacob does come stateside to California on occasion.
Upon hearing the big time doctor's name mentioned on national television, I emailed to set a tentative date for treatment in Germany.
I am scheduled for August if my disease continues, or maintains, the path it has for the past 3.5 years.
Tonight on NBC is Farrah's documentary of her battle, which I hope includes visuals of her travels internationally.
I'm going to be watching and taking notes to prepare myself for my very own trip. Everybody else please watch too.
We can all mentally prepare ourselves for the journey I'll be taking.
I'd like Farrah to know that, yes, her disease has meant something and changed attitudes. It has specifically helped me. God bless her and keep her in your prayers.

Era of Inevitability

Health care leaders are officially on the move mediating health care reform headed by Mass. Senator Edward Kennedy (D), who has been chairing twice weekly hearings with the countries healthcare leaders in hospital, drug and insurance industries.
There are bound to be squabbles with so many hands in the same pot. Too many cooks in the kitchen looking to protect their interests, such as profits, amid efforts to to squeeze the cost of delivering health care and to increase regulation among companies has been a long standing problem for the American Health System.

“Health care’s legendary interest groups have stayed at the table in ways that are unprecedented,” said Drew Altman, health care policy expert and head of the nonprofit Kaiser Family foundation, in a Los Angeles Times interview.
It is a phenomena that so many industries directly tied to healthcare are hanging by their fingernails to maintain their stake in the business, but I have one question: where are the patient representatives in these talks?

We, as patients, have a huge stake at the table. Reports on the news today announced that medicare is allready paying out more than its incoming revenues. It is scheduled to be defunct by 2017. Social Security will be soon to follow with its implosion due for 2032.

Where are the people who have navigated the system but also possess professional knowledge that could be useful in brainstorming collaborative ideas that would be in the best interest of the stakeholders, i.e. hospitals, pharmaceutical, and insurance companies, and the consumers?

As patients, we are the consumers of the products these committees are trying to make. We can offer insights into the short comings and needs of our current system from a first hand perspective.

Dana Farber Cancer Institute employs a Patient Board of Representatives with this exact theory in mind. This board exercises powerful decision making to improve the quality of care provided.
How do I know about a patient board of representatives at Dana Farber Cancer Institute?
I hope to join them in June when my restrictions have eased enough to enter a boardroom without fear of infection.
Dana Farber is one of the most prestigious cancer centers in America, ranking third behind A.D. Anderson in Houston, TX and Memorial Sloan & Kettering in New York, NY.
If select patients are deemed intelligent enough as consumers to participate in improving the quality of the daily functions at their hospital, I would deduce patients would significantly contribute to solving America’s health care woes as part of the collaborative effort taking place in our capital.
It is time to recognize the stake patients have as consumers in healthcare reform. Unaffordable healthcare cost to patients as consumers is one of the primary reasons we have reached this era of inevitability where healthcare can no longer be ignored without suffering dire consequences as a country.
Please, leaders in Washington, invite us to the table too.

E-Drive For Jasmina & Kai (from Duane)

Hi everyone,

Hope everyone is having a stellar weekend!

Like so many, I've been moved by six-year old <http://oneforjasmina.com/> Jasmina's desperate search to find a matched unrelated donor. For her aggressive form of leukemia, a bone marrow transplant holds the only hope of a cure.

Kai, <http://www.hopeforkai.com/>, who is four-years old, is also suffering from leukemia. He too is searching for a life-saving donor.

These two remarkable, resilient kids have inspired me. I contacted <http://www.dkmsamericas.org/> DKMS, which is coordinating the donor search for both Jasmina and Kai, to find out how I may be able to help.

The result is this e-donor drive.

So, I need your help. If you're healthy, I hope that you will register to become a bone marrow donor.

Even if you are not found to be a match for Jasmina or Kai, you may be the single hope that someone else has been waiting for.

It only takes one person to save a life.

As the fortunate recipient of an anonymous donor's selfless generosity, I can speak firsthand about how critical this period is right now to these two precious kids and their families.In order to register as a donor you must first check to see if you are <http://www.dkmsamericas.org/category/bone-marrow-donors/become-marrow-donor/eligibility> eligible, then you must read about the <http://www.dkmsamericas.org/category/marrow-donors/become-marrow-donor/understand-your-commitment> commitment involved to ensure that you understand what it means to register as a bone marrow donor.

Once you have done this, send an email to info@dkmsamericas.org info@dkmsamericas.org> stating that you are eligible and understand your commitment.

Please include the following drive code: DBC001.

Though I have not yet had the great honor of meeting the individual, who saved this stranger's life, I hope our paths will cross in the not-to-distant future. Just think: you may be the match for Jasmina, Kai, or someone else. Please spread the word!

Middle of The Night Waking

I'm still playing catch-up from my first family vacation in who-knows-when, and basically, a week long mother's day extravanganzaa.

Whoa, am I spoiled by the two men, big and little, in my life. I'm one lucky momma.

Today, I'm posing some writings from over the weekend to catch you all up on the life and times of the Ford family.

Appointment Update

Real quick, Thursday's appointment went really well. I will be decreasing my prednisone by 5 mg so now I will now be taking 25 mg daily until my next appointment. I will also need to send Dr. Alyea Dr. Paul matzkin's email, so he can be in the loop.

Everything looks great.

I probably won't need a t lymphocyte infusion since chronic gvhd is essentially the same thing. Lymphocyte infusions are generally reserved for people who do not have the reaction I have.

I guess there is a silver lining in all the suffering of GVHD.

Middle of The Night Waking

FYI- Xander staged this picture on the right. My little photographer made me what, camera in hand, to snap the shot at just the right time. He was right, this picture is awesome. It really catches how happy he was this weekend, and no, my parents were not in the room with us. They had their own. We were all in Portland, ME to celebrate Grace's graduation from University of New England with a degree in NURSING!

It's my midnight waking or middle of the night waking time.

It's rumored MC Escher would take advantage of just such a lull in conscious states, where sleep met wake, to create his art. I hear he would hold a key over an iron pan and just as he was transitioning into slumber the key would fall to wake him. Then he would draw. He would draw beautiful pieces of connecting art no architect could ever build and no artist could emulate no matter how hard the try. This is the type of writer I would like to be: escher style, nonpareil, maybe someday.

Today, I'm doing my new nightly ritual of waking up to write. I think it has something to do with the steroids. I wake up to write and eat. There is no sleep for me on an empty stomach. The same night foraging happened after my first transplant.

Like this time, I had lost a significant amount of weight and strength due tp pneumonia that kicked my ass so badly it to six weeks to recovery. I was brought back to life again with steroids. I would wake up every night and need to eat a bowl of cheerios or not go back to sleep.

Funny thing was, Heather was living with me at the time, and she was pregnant. It was all out sibling rivalry for the food.

It was more important to each one of us to gain weight: me to regain strength and the ground I had lost to not look like a skeletal cancer patient and her to feed and nourish the developing unborn child inside. It was an all out battle of the fittest for survival over the cheerios.

We would go through four boxes a week mostly from late night pillaging when either of us would wake up and get as many bowls into ourselves as we could before the other got to it and we were out.

Loser should have had to go to the store to buy more, but really, the loser just didn't get cheerios that day and jon was sent running to the store to appease the two seriously hungry women he was housing.

I'm not quite that bad right now. At my appointment yesterday, Alyea decreased my prednisone dose to 25mg daily. I'll stay at this dose for the next couple weeks.

Thank goodness. I have gotten moi joi de vivre back.

I had been sick for so long functioning misery was my daily expectancy.

Now, I am rediscovering life. I am falling in love with it again. I am remembering why I am fighting so hard and what exactly I want to live for. I have dreams, big dreams of making the world a better place.

I like people and want the to succeed in life doing good. I want to be here to help and see all the wonderful things that can happen when humanity is put to the test and rises above the challenges to reveal their inner greatness. This is definately worth fighting for.

John Barrymore stated that "a person is not old until they have seen their dreams turn to regrets."

I am not there yet, not even close. I hope I won't ever be. I am alive and I know because I have dreams.

For Moms: Happy Mother's Day

Before I was a Mom, I never tripped over toys or forgot words to a lullaby. I didn't worry whether or not my plants were poisonous. I never thought about immunizations. Before I was a Mom, I had never been puked on. Pooped on. Chewed on. Peed on. I had complete control of my mind and my thoughts. I slept all night. Before I was a Mom, I never held down a screaming child so doctors could do tests. Or give shots. I never looked into teary eyes and cried. I never got gloriously happy over a simple grin. I never sat up late hours at night watching a baby sleep. Before I was a Mom, I never held a sleeping baby just because I didn't want to put her down. I never felt my heart break into a million pieces when I couldn't stop the hurt.! I never knew that something so small could affect my life so much. I never knew that I could love someone so much. I never knew I would love being a Mom. Before I was a Mom, I didn't know the feeling of having my heart outside my body.. I didn't know how special it could feel to feed a hungry baby. I didn't know that bond between a mother and her child. I didn't know that something so small could make me feel so important and happy. Before I was a Mom, I had never gotten up in the middle of the night every 10 minutes to make sure all was okay. I had never known the warmth, the joy, the love, the heartache, the wonderment or the satisfaction of being a Mom. I didn't know I was capable of feeling so much, before I was a Mom . Send this to someone who you think is an awesome Mom. May you always be overwhelmed by the Grace of God rather than by the cares of life

The All-American Family Road Trip

I'm back from our first family trip since I can remember. I wrote the whole time, but believe it or not, didn't feel the compelling urge to post and update the whole world immediately. I hope everybody survived and nobody underwent withdrawals in my absence. Here is my writing from the car ride to our destination.

Aww, the all american family road trip. It's making a comeback in a big way in recessionista fashion. 

There is no reason for mega-starlette vacations of the 90s, no need to stay a princess castles with makeovers for 6 year olds. 

No, were going back to good old simple american values. That equals family time in a car together, talking, listening to old CDs with the kid DJing from the back seat, and the parents screaming their lungs out and dancing. This means site seeing, actually getting your noses out of those blackberries (guilty), nintendo DSs, and portable dvd players to have actual conversations over math homework, thank you notes, and coloring.

We're bringing back the geography games, I spy and checking how many different license plates we can find. 

It's all good times for the price of gas (if you can afford that and hopefully due to that new great trend of living within your means and driving cars that reasonably meet your needs too (I am loving my jeep compass for travel with all its storage, despite that minor dent incured from the incident in february when I was using it like a toy and had to be dug out of a snow bank. J got frustrated and took it out on the car. And it's American!)

 We're headed to the highway, listening to old skool comedy and seeing nothing but good times ahead.

VACA-DAY!

Today is vacation day!
I’m calling it “Vaca-day,” like a national holiday.
It is definitely a holiday to me, marking the first weekend that I can venture beyond the confines of my home or hospitals (sometimes I can’t tell which one is which anyway), safely, with permission from my super-specialist.
Yes, Brynn was right, I’m certainly behaving like a kid looking forward to Christmas.
Since I’ve been behaving this way, my son has been as well.
And since this kind of excitement must be contagious, Jon got in on the action too.
Xander, Jon, and I went through all our old CDs last night to DJ the trip. Xander has a newfound love and fascination with music. He’s interested to hear the type of music mom and dad shared before he came into the picture.
We organized those into three different CD holders that Xander can pick from throughout the trip. Yes, we had that many, or should I say, Jon had that many. He was a major CD collecter before and during our early time together.
Xander and I also packed our clothes together. X has always been a motivated packer. HE was two years old the first time he tried to independently pack for a trip to Florida. He had his clothes folded and placed in outfits all by himself.
This trait must be from both nature and nurture. He’s been organizing to pack ever since, if he really wants to go somewhere and he feels I’m slacking in any way that is.
I also had the time, the energy, and the ability to organize myself for the trip, which as you can imagine, is no simple task.
Of course, I’ve been packing and traveling back and forth, back and forth, and back and forth to specialist appointments for almost a year now, but I’d never had the time to organize my needs so well.
But now I’ve done it! I’ll give you more on how to be a super organized packer in the wake of disease later.
Thank you steroids for making this all possible: the ability to plan a trip, feel decent, and pack like the meticulous mom I am.
Of course, I probably have still forgotten something, but whatever that something is, I’m sure we’ll be just fine without it.
We’re not hiking The Appalachian Trail or anything, we’re just taking a quick drive to Bean Town to meet with my Doctors as scheduled and then up the coast through NH to ME for a family weekend celebrating Grace’s graduation from Nursing School.
You may have read her comment the other day, and Grace became a nurse because of me!
I wasn’t going to say that out loud without discussing it with her first. That assumption would be just a little narcissistic to assume that a person would make a major life decision, such as a career, due to my influence, but she said it!
It’s true. I am so flattered and excited.
Grace and I were going down memory lane this past Monday discussing where we were during her high school graduation three years ago, and guess what, we were together, doing things very similar to those we are now.
I took her to get a manicure and a pedicure. We had gone to NYC for the weekend to celebrate the end of her senior year (we had planned to go to NYC last weekend, but with scary outbreaks of weird flu I decided to hide safely in the country).
Then I went to her graduation with her, followed her home, and helped organize her party.
Now we’re doing it all together again, only for college, and a degree in NURSING!!
Go grace, the world needs more nurses like you.
This morning I’m up, I’m ready, I’m rearing to go.
Jon and I decided that I will be leaving my beloved laptop, Jaunes, behind. He is big and bulky and does not travel well.
I will be bringing my blackberry with me, which I received as a present from some fine man earlier this year.
I have not named my blackberry yet, but “Cherry” comes to mind. She is a pearlescent pink and functions as my complete electronic assistant.
You will be seeing postings from me this weekend, but understand, they will be some of my first as a “3G Family.” I think that is what the commercial calls us anyway.
I know I can get the text in, but as far as pictures go, we’ll wait and see on that one.
We’re certainly up for the adventure and the challenge.
I’ll keep you posted on how the convo goes with Dr. Alyea, my super specialist, today, regarding the possibility of my T-lymphocyte infusion in June.

Cancer Patient Holiday

I’m up again, early. It’s 3 am. The 10 mg of ambient I took and a mg of ativan to sleep soundly through the entire night did not work exactly as I planned.
Those are”knock-out” (or narc-out, as I would say) doses of medication for sleep and anxiety.
They were taken with the goal that I would wake around 7 am after a dreamless night of sleeping like a baby.
That didn’t happen, I’m awake, but it’s okay.
I think I’m . . . . .I’m excited.
It’s a hard emotion to identify. It’s been a while since I’ve felt this way. It’s a mix of kid in a candy shop (or me in a Banana Republic Outlet store on a clearance day) and the morning of Christmas.
I think it is definitely excitement, though I can’t quite put my finger on it, that I am now entering a phase of my life where I can once again participate at a minimum functioning level in the world, with the world.
“Excitement” was the word Brynn used after reading yesterday’s post. She teaches elementary school, so I think she can adequately determine what excitement looks and sounds like.
I’m giddy. I’m going on a mini-vacation. I went out to eat for pizza at Ramuntos with my family sans mask and only mild paranoid fears of infection last night.
I did errands.
I have a renewed joi de vivre that I realized had gone missing, but didn’t realize how much I missed it.
I am getting my grove back.
The stars are aligning for one major comeback kid, at least in personality, if not in health.
Today, in these early waking moments, I’m happy to start my day and accomplish the little things that, not only do people take for granted, but they moan and groan about doing as a chore.
I have to wrap Grace’s graduation present, which is large and will be difficult to travel with, but will be so worth doing for the look on her face. And yes, it needs to be wrapped.
I need to pack appropriate clothes for Xander and I for the weekend, taking into account that the weather is iffy and may rain. It’s Maine. I’ve never had much luck with the weather in Maine.
I need to load up the car with juice, munchies, and an okay amount of electronics, such as X’s DVD player and Nintendo DS, to keep him from screaming and whining “when are we going to get there?,” but to still force him to look at the scenery.
I need to pack his new favorite things: math books. Yes, math books. He loves to quiz people on math and do workbooks for fun. Lucky I bought those spiderman math workbooks and flashcards when I did. It’s exciting he’s is so motivated to learn, but hours of “MOM, I know 2+2, 10+10, & 200+200!” and “Mom, what is 7+8?” gets a little tiring, even as a parent whose pride and joy wants to talk numbers.
All this is exciting. I hadn’t been out to eat at Ramuntos since early September. Ramuntos was the site where one of my very first postings began. Check out “I’m a very bad patient.” It was the scene of one of my final party night good times prior to my transplant.
Trust me, yesterday was more low key, just the family and me after karate class.
Xander was on cloud nine after winning a couple games of “ninja ball” at the dojo.
The Sensei told Jon he definitely can spot a competitive kid, Xander’s got the edge in him.
Xander was concerned this was a bad thing. He had never heard himself described as “competitive” before.
Jon and I don’t think it’s bad. This characteristic certainly needs to be harnessed and guided like any budding personality trait, but it was to be expected, look at us as parents.
We’re both extremely competitive, whether it’s nature or nurture the streak has been passed down.
That’s my excitement for the day, at least, my excitement as of 3:26 am.
I’m going to crawl back into my warm soft bed and see if I can steal those last 3 hours at least of sleep I want.