Self Fulfilling Prophecy

The theory of "self fulfilling prophecy" is that if you tell a child early in their life, prior to junior high, that they are "bad, "stupid," "smart" or "talented" then that is how the child will behave. They simply rise to expectations. 

I have seen occasions where a child is labeled early, by two, as naughty or bad and the idea sticks. 

The parent "warns" teachers, coaches, etc. or the family talks about how horrible the behavior is, and the bad kid label stays.... Forever, until it's true. 

In one instance I've watched, I told the child he was good and that he wasn't bad, he just needed help learning. 

This was at 4 or 5. 

I didn't know what would happened. It was an experiment. 

What happened was I became his moral compass. If he didn't know right from wrong, he'd ask, and I'd give him an answer, not a beating or a screaming lecture. I'd make a joke, we'd laugh, and go on our merry ways.

 Now, years later, he picks up after himself, uses please and thank you, even opens doors.... With me, but I'm still told what a bad kid he is. 

I believe what I'm told. He yells at women, demanding things, threatening others, throwing things, calling names. 

It breaks my heart knowing these behaviors exist within one child and the simple act of patience and compliments may make a pivotal difference.

 I don't know if it would change his entire behavior, but I'm happy I get a chance to help. I'm saddened I may never know the difference it made or would make in the future.

 I also know another situation where the opposite was true.

 A newborn girl was expected to be severely mentally challenged with seizures and cerebral palsey. She wasn't ever supposed to be independent. The doctor told her parents, "not to expect much."

 Her parents called her a miracle and convinced everybody the same until she was labeled "a miracle child." 

She was dyslexic and could have been told she was disabled, stupid, and would never read or write. 

Instead she was told she was different and gifted to have a unique point of view.

 I know that made all the difference in her life, because that girl was me. 

Thank goodness I had the parents I did, especially mom, who made me a miracle. 

Happy mother's day to all mom's out there. Mom's are miracles.

Quick-date

I've been haunted by a sadness the past couple days that I can't figure out. 

Life is good.

NYC was the best time I had and we had in a long time, longer than I can remember. There was no exhaustion, No stopping to throw up, No gasping for breath. We were happy. 

At home I've stayed healthy. 

So why the sadness?

 Maybe, it's in the idea that this is temporary. Its hard to enjoy life when the happiness could be fleeting. 

At the time, I' can be in the moment, but its when I'm riding in the car, sitting on the toilet, watching tv, my mind wanders to the what ifs. 

But I've been coping with that forever.

 It may be mother's day, the anniversary of beginning my chemotherapy. J and x got me a diamond heart necklace 5 years ago, because, "I'm the heart." X said. 

A star pendant was the other option but, He was the star he said.

He was 3. 

I'm lucky to have 4 more moms days since then.

The, for some reason, I can't get all the children who do not have mom's to celebrate today with or who have mom's with less than perfect conditions, in jail or who have run off. Those thoughts would depress anybody.

On the bright side. . . 

My car was cleaned this year. I found the perfect piece for the patio set, a large hammock..... For $28!! They're usually $100+. 

My gift was getting it hung up and some yard/patio work.

 I finally have a place to rest outside while the boys or kids play! Boo-ra! 

That'll keep the sadness at bay through the chemo this week.

How Professional Biases Affect Our Health

"Sometimes I just give him saline instead of ativan. He asks for it so much. He's not THAT anxious." The nurse whispered to me. 

I peered at the patient sitting paralyzed in his wheelchair, head up, exposing the hole and tube in his neck breathing for him. The plastic canula was taped to his face. Frothy spit kept rising up, coming out, and threatening the security of the tube. He couldnt talk. The vent kept beeping with alarms. 

I was nervous just looking at him. 

He was a healthy 50ish independent man before a car accident made him an overnight quadraplegic. Medically "stable" he'd been sent to a long term ventilator unit indefinately.

 I looked back at the nurse, appalled, wondering how comfortable she would be. 

Yes, biases among health care professionals are very real, and yes, they do effect treatment. 

I know. I've been there on both sides of the treatment table. 

In school, practitioners are told subjective problems like pain or anxiety are "whatever the patient says it is" and to medicate accordingly. Then real life hits where everybody has their own experiences they use to decide how to treat others and drug addiction hits a nerve, especially when a young person is involved. 

This is a problem that will grow as the chronically ill live longer, as cancer patients live healthier, and as the population gets older. 

Nobody with severe health problems expects to take massive doses of narcotics. They expect to die or get better, but that doesn't always happen. 

With the issue of pain management unaddressed, professionals take it upon themselves to regulate patients' medication if they think the person has gone on a free-for-all.

From experience, pain management is not fun amidst the suffering. 

It's past time the drug tolerance issue is addressed large scale, in schools and hospitals all over, but I'll start here answering some burning questions I once had but couldn't ask. 

Yes, after five years with cancer, I am addicted to my pain killers. I'm addicted the same way someone who drinks too much coffee or takes anti-depressants is: physiologically, because of my chronic long term suffering. 

I take, nurses give me, and doctors prescribe doses large enough to kill me.... If I'd never taken them before. I've taken them for four years, building a tolerance. The doses would kill the average person who has never had them, I'm not average. I have experienced suffering unimaginable to most.

I've  been asked if I take more than I need to "have a little fun with it." by a Doctor.

 I wish I could. I take morphine to take a deep breath pain free. I take it to not feel my bone marrow swelling in the hallow of my bones, expanding outwards, trying to push its way out. I take it to not feel the tumors growing, pushing on my kidneys. 

In spite of my extensive serious health history and an appearance contradictory to your stereotypical addict, I've been labeled a "drug seeker" and refused morphine in an ER when I arrived in septic shock with a fever of 100.6, BP 80/50, H rate 160 and drifting in and out of cognition after 5 years with cancer.

 Drug addiction is the least of my problems. 

Judgments don't bother me.

 Morphine is part of my regimen. It takes stress off my body, allowing me to heal more quickly. I avoid pneumonias by breathing painfree. I can rehab after a setback that would leave me bedridden. My morphine allows me to walk, regain strength and build muscle. 

It is part of my regimen the same way my inhalers allow my lungs to expand or my folic acid assists my Red Blood Cells in growing. 

Ignorance does bother me. Failure to recognize the role pain control plays in healing is ignorance. 

Worse, suddenly refusing pain medications causes physical withdrawals. Nerves feel fried, firing and shocking. Cold sweats set in. The pain is made worse. 

When biases effect care, health outcomes suffer. The patient has an acute pain problem beyond their chronic pain, and often withdrawals. 

 Now that some of your questions are answered, all I ask is if you're ever in this situation,  please, Have mercy.

Dr. Wong Must Be Right: My Chinese Herbalist

Far and away the best prize that life offers is the chance to do hard work at work worth doing. 

         -Theodore Roosevelte

Traditional Research Doctor
and renowned herbalist
Dr. George Wong.

"The cancer will never find me. I'll throw in a herb with no use so it won't discover who I am, just to change so the cancer can't catch me."

"He's stealth, like ninja," I thought with a silent over tired giggle. 

Glancing at my husband, i decided that sentence would be inappropriate to say to the Chinese Naturopath, Dr.Wong, I was consulting for the first time.

Dr Wong has been a practioner for 30 years. He graduated with his doctoral degree from Harvard in 1978. He began his career in research at Memorial Sloan and Kettering in 1982 and currently is a faculty member at Beth Isreal in NYC.

That is only a portion of his main stream resume. 

I'm seeing him for what he can offer outside of the box in alternatives or complementary medicine for my refractory, incurable, Hodgkin's.

He asked very little about my treatment history, but reviewed my current status. He assessed my energy by holding my hands with eery accuracy. 

I was impressed he considered how quickly my cancer mutated to defy treatments. No American medication puts in placebo ingredients to confuse the cancer and stop its mutation.

 "We're playing catch up now." He said, looking at me intently. "We have to build your immune system so it will grow strong."

 "YES!" I agreed. This is what american standard cancer medicine misses.

 We take away the immune system, but do little or nothing to ensure it grows back and matures in a healthy manner, leaving a gap for relapses. Our few medications, namely neupogen, force the growth of bone marrow but does nothing to ensure the health of the cells. 

This was why I was there. I'm searching for the missing treatment piece that will cure me. 

Dr.wong went on about the pharmacy he used, the process of creating his remedies, and how to take them. 

He didn't, however, tell me any of the herbs he was including. He even said some were not even named! 

College Friend, Sam, and I in Chinatown

"Then give me the damn pictures!" The controlling intellectual in me thought. 

He'd asked very little about my treatment history. He assessed my energy by holding my hands, and after this hour long process I found myself handing over a check for $350 for the consult and a credit card number for the unknown herbal extract with no estimate of cost.

It turns out the cost is about $150 every 2 weeks to strengthen my immune system.

This is what desperation does to a person.

Of course, he assumed I could blindly afford it. He met me in a conference room I overtook like I owned it at The Hyatt Grand in NYC. 

Little did he know I was mooching off mom at a conference for a free fun weekend that, at one point, I never thought I'd physically be able to have.

I left him feeling reassured. The $350 covered our consult and any follow up questions I may have. Any issues with the actual concoction are taken up with the pharmacy he uses.

 Now, if I can only find a way to stomach the dirt/olive tasting tincture without throwing up, it will all be worth it. 

There is a silver lining in every cloud of gray

I'm playing catch up from our family weekend in NY. I'm catching up on rest first, then catching up on writing, chores, shopping, laundry, organizing our first Relay Meeting and upcoming Volleyball Tournament Sunday May 22 (start making your team!).

I'm taking a break from catching up to tell you all my PET scan results from Monday.

My scan is still positive, but the cancer has significantly decreased!!
This is a fabulous finding since I've only been taking 60% of the recommended dose to treat Hodgkins.
The disease is so significantly reduced we are considering not raising the dose and keeping it at 60% for the treatment duration.
Hooray to both health and Treatment!

Now, I just wish there was a way to manipulate the Bendamustine, changing it minimally, so the cancer doesn't recognize it, mutate, and grow.
This is a concept not used in American Cancer Treatment, but used among foreign practitioners, specifically Dr. Wong, the naturopath I met with this past weekend.

NH At It Again

Ugh, it's WORSE than it looks or we thought. 


NH is voting tomorrow to not only join an expensive lawsuit, but reject and return grant money received and used for an electronic health exchange.


What a second?!


Our leaders are voting to spend money to go backwards to rooms stacked high with medical files or where e-faxed medical records go un-shredded into the trash?


And giving spent money back on a project started over a year ago (and I know being on the committee)!


To clarify, The New Hampshire Citizens Alliance States:


"HB 89, which requires the Attorney General to join the lawsuit against the new health law and seeks to nullify the personal responsibility provision in the new health law. 


Last week the Senate Commerce Committee approved an amended version of HB 89 (4-1), converting its text to the language of SB 148 as it was originally passed by the Senate.  That amendment language says that the New Hampshire AG "should" (rather than "shall") file suit against the federal government over the ACA."


Why the revote and change in language?


Forcing an Attorney General through legislation by stating he "Shall" join is unconstitutional.


NH is wasting their time and money fighting the constitutionality of the healthcare bill with unconstitutional legislation! 


Now that is irony.


If Representatives were listening to their constituents and leaders they would stop this madness and join NH's Attorney General who has stated clearly he does not want to join in an expensive battle that will go on with or with out us.


Where do they think all this cash is coming from!!! 
This is all Sad but true. Somewhere, somehow our government has changed from a democracy to an idiocracy.

After an exhausting but fabulous weekend my treatment has found a way to force me to rest and recover: a PET scan today!

My PET scan scheduled for the past several weeks for Weds. May 4th was changed with a surprise phone call Saturday!!

Last minute appointment changes are par for the course. Any patient needs patience, especially when recognizing you don't have much control over the schedule.

I don't know why they do this. I think it may be for giggles and amusement.

I absolutely scrambled to find a ride for me (the test takes 3 hours) and someone to pick up X since I'm banned from driving for 24 hours, but it's done!

On the upside, the xanax they give me will have me sleeping like a rock until X's baseball game tonight.

I will rest then I'll let you in on the good times and the results. 

Affordable And Fun: How to Travel Today

Traveling down I-95 my heart skipped a beat as I looked up from desperately trying to find the Burger king receipt for its deduction only to see, horror, gas is $4.43!! 


Then, worse, I realize, Wait a second, we're not even in Manhattan yet!


 We're not even in NY, just S. Conn, and rumor is gas will hit $7! 


With these prices in the mix, I can guarantee planning my future health and summer travels will include hotel discounts. 


With luck (that means success!), I may need to travel back to NYC for health care. I'm consulting two naturopaths while here: Dr. Wong and Dr. Clarke.


Dr. Wong's first consult alone is $350, not including the arsenal of herbs I expect him to recommend.


Super couponing and collecting pennies won't due to cover these costs. I'm breaking out the super saver in me and looking into hotel deals. 


Luckily, I found www.discounthotels.com in my search and a 4 star Marriot in NYC for $199. That price is lowest, 110 percent gauranteed, and you can't go wrong with a Marriot.

At least I can afford the hotel.


The silver lining in this is, studies have proven that people who use their money on experiences over inanimate objects report being happier. This is why I try to make any medical travel an actual "vacation," and maybe, just maybe, with the inexpensive vacation packages, I can continue to do that. 


Even better, maybe, just maybe, not only can I have my cake and eat it too, but I can get my care and have money for souvenirs.