Baldies' Blog began originally in the UK by a 26 year old journalist with a blood cancer on a mission to inform the world about bone marrow donation.

He has since died, and I took on the cause of making cancer care more transparent for everybody.

Cancer is a disease that will touch everybody through diagnosis or affiliation: 1 in 2 men will be diagnosed and 1 in 3 woman will hear those words, "You Have Cancer."

I invite you to read how I feel along my journey and
how I am continuing to live a full life alongside my Hodgkin's lymphoma, with me controlling my cancer, not my cancer controlling me.

I hope that "Baldies' Blog" will prepare you to handle whatever life sends you, but especially if it's the message, "You Have Cancer."

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Saturday, February 28, 2009

Appointment Adventures

On Thursday J and I decided to make a “road trip” out of our excursion to Dana Farber. We decided to take a different route than usual to have the experience.
I really wanted to feel like a tourist in Boston.
The fun thing about Boston is that from one block to the next, one street to the next, or even one building from the next, there may be a huge difference in environment.
If it’s a Red Sox game day, watch out, the fans are all in and everywhere.
I wanted to see what else I had been missing while I was on the inside.
I had been missing some gorgeous landscapes, but J had to force me into putting my camera down and "stop acting like a tourist" so we could actually find where we were going. The garmin kept saying things like, “in ¼ mile take the second exit off rotary” and we’d look up to see we were in a residential district.
But the directions did work and we got their safe, sound, and on time.
I was really excited to inform Alyea that my low grade fevers had subsided, but when vital signs were done, that bubble really burst, my temp was 99.2. I was also weighing in at 107 lbs.
KeKe said it could be the mint in my gum attributing to the raise in temperature. Alyea says it could just be a virus, even a virus that has lasted since October.
I think I was just getting hot flashes. Whenever I get nervous, I get hot flashes. This often makes it more difficult for me to handle whatever situation is making me anxious since I am now flushed, sweating, and stripping off layers of clothes, often down to my tank top underneath.
I think that may be a little distracting to everyone involved. However, it does stop fights between my husband and I quickly.
It’s difficult for him to be angry while I am simultaneously arguing and stripping off my clothes.
Anyway, my labs all looked great. My eosinophils are a little elevated as well as a liver enzyme, which both indicate an underlying graft vs. host disease. This is not required to be treated, just watched, as I am not having liquid bowel movements, abdominal pain, severely scratchy eyes or rashes.
On exam my abdomen felt soft despite the constant pain it has been sending me.

I was found to be, wait for it. . . . DOING WELL.
We discussed some homeopathic medications I was unsure of, neither of which he could recommend since he had never seen him before. I explained the rationale for both, but chose only to use one that stimulates drainage within the lymphatic system and contributes to spleen health. I will start this on March 4th, a week before my next appointment so we will know if it interferes with my other medications.
The other medication got the ax since neither one of us were comfortable with knowingly adding viruses into an immature immune system.
I got my prescription for acyclovir written and I was TAKEN OFF magnesium! YAY! One drug down, 20 more to go.
At our next meeting, I will be completely removed from my prograf (or tacrolimus) and my immune system will begin functioning on its very own with out chemical assistance!
I’m excited. I think this marks quite the milestone in my treatment. Now, I’m anxiously waiting for my PET scan in mid April.
It wasn’t all about seeing Alyea that day, no way. I had finally gotten an appointment with Grant Hou, a very well loved and highly in demand acupuncturist that practices in the Zakim Center at Dana Farber.
The beauty of the Zakim center is that it provides scientifically proven complementary therapies to assist in fighting cancer for a SET FEE of $55. Insurance companies often do not cover massage, reiki, or acupuncture for cancer patients though they have long been known to assist in healing. The Zakim Center makes these therapies convenient and affordable.
I had no idea what I was in for with the acupuncture. I had heard the needles didn’t hurt and that it worked like a drug. The people I asked also said they feel into a trance like state.
Sounds good enough to me.
As it turned out, all those things were very true. Grant started placing needles, quickly, through my scalp without pain, and when the fourth needle was placed, I immediately felt a rush and an overwhelming comfort blanketing me.
The only comparable feeling I have ever had is when I am in pain and the nurse comes to give me an IV push of medication. The effects began that quickly with acupuncture and without adding anymore unnecessary toxins to my body.
Then I was told to lay still, relax, and listen to the music. I chose to do deep breathing exercise alongside the acupuncture and picture the characters from X’s spiderman video game fighting and obliterating any tumor that may be in my body. Then I also thought about my lymphatic system being squeezed and stripped so cells can seamlessly run through the system.
I’ve never really been one for visualization, but in the hospital I certainly did. For a nap I could sit quietly, close my eyes, and think of the beach and be there in my mind with the wind, the sun, and the blanket.
Mind traveling is the only kind permitted for me right now.
As far as acupuncture, I like it. I’d recommend it. I’ll be going back for more. I am all ready scheduled to do it again in two weeks when I go back to Bean Town and even if it does not have the exact effect I’m seeking at least it makes me feel healthy, vibrant, and free

Friday, February 27, 2009

Disability Discrimination

Disability discrimination is a subject I have alluded to, as a theme among my postings, but have never outright commented on or labeled.
I have spoken about my own past experiences with dyslexia, trauma, and illness as examples.
Thanks for hearing. Thanks for supporting.
What I can no longer tolerate for me, my family and all others like us who either publicly or privately boldly face our trials is the inability to access appropriate interventions or even a minimum standard of care.
This has been a long, under reported problem among the sick and disabled. We are all just too sick to fight.
Even Sybil, the first case study that defined “multiple personality disorder” in 1928, did not have access to a psychiatrist.
Her story was made notorious in the 1970s film of the same name.
She was taken on as a “study” to receive treatment only to be diagnosed with 16 distinct separate individuals within her.
Even in the 1920s, to achieve this quality of care, she had to lend herself to research.
I have the option to do the same. In August 2008, when my story became public, I was told I could allow Genzyme access to my medical information by calling their “stem cell research department,” and they would pay for my care.
Also, as an example, please see Alese Coco’s Fight2win.
I politely declined. The information my body contains will not be owned.
Selling it for my own comfort would not solve the problem of inaccessible and unaffordable treatments throughout America. It would lend to the 800 million dollars it costs in research and development to bring one drug to market, which takes, on average, ten years.
Many of us do not have that time.
I chose, instead, to face my trials publicly and appeal to the mercy, or hatred, of public opinion for free so everyone could have access. I chose to collaborate with moral providers who want to expedite a cure in hopes no person ever will suffer like I have.
Now, I keep waiting in line at the pharmacy behind people coughing and complaining of their back pain to receive their prescriptions for $0.50 and watch them leave with their full prescription reaching for their cigarettes and lighters.
When I step up, I pull out my credit card and often do not even receive my whole prescription antibiotic or pain control.
It is estimated 50% of disability and Medicaid are fraud.
I am not one of those people. My story does not make the news, but the woman who defrauded the community by faking cancer does. To receive assistance from supporters, I have allowed background checks and conversations with my specialists to confirm I am who I say I am.
I do not qualify for NH’s Catastrophic Health Insurance policy since, well, I am not a catastrophe by their standards.
I do rely on the compassion of others. I have heard and have experienced, that there is “no such thing as a free lunch.”
I state I have nothing to offer, quid pro quo is not available. What I do upfront is select carefully, set boundaries, make our situation, our history, and our needs clear. Everyone needs to be informed.
What I ask for is simple: communication.
If there is a problem I need to know as soon as possible to address the issue so all involved can be protected.
A friend told me once, “If you’re ever getting your nails done and you think the girls are talking about you, they are.”
Fear of judgment is the primary barrier to people in precarious situations seeking help and being open.
It is why HIPPAA exists. We are protected under the umbrella of “anti-discrimination” laws.
To publicly face illness, and to demand a safety net for you and your family, is to accept that you may be slammed as contributing to the victimization of America, or called selfish for channeling your “fight or flight” instincts that, really, is how we are all here in the first place, and ungrateful for asking for open communication and openly expressing feelings.

This is a well known barrier for finding patients for clinical trials and expediting the process to find a cure, just ask the American Cancer Society or a researcher. People who are needed to share their information to help others have long been in hiding due to the fear of discrimination and judgment.

I know that next person maybe you. I won't allow it.
We all have our own problems that arise. If parties involved communicate anything can be handled. Do not avoid the truth, even if it hurts.
In confrontation, I did say a person could “read about how I feel on my blog” and let her know she was not named, any other account is hearsay and gossip.
Please, look around and do not say that autistic child is just bad, or that mother caused her child’s down syndrome, or if that child just tried harder and his parents were more involved they would not have that cerebral palsy or anger.
It’s hard to admit when things are beyond control. We all do the best we can with the information we have.
A dyslexic is not just dumb.
If this was taken to heart, Einstein wouldn’t have contributed to physics. If I would have stopped writing the first time I was baselessly accused of plagiarism, you would not have the opportunity to understand the inner workings and social dynamics of the sick.
If my child is just misbehaved you are missing that he is hearing impaired and has undergone several surgeries concurrently with mine.
If I am just a bad neglectful mother for choosing to fight my disease, to go into VTACH, respiratory failure, heart failure, have the entirety of my skin peel off, my entire intestinal tract slough out and lose the sensation in both my hands and my feet only to roll over, stand up and ask for more because while I was lying in pain during these situation all I could focus on, my one tie to life, was that my child would grow up motherless. Then so be it.

If any of you would choose a world leader who was charming and strong, who eats wisely, does not drink, and is not a philanderer over a person who chooses to publicly disagree and face accusations of heresy and cannibalism, you just picked Hitler over Jesus Christ.
If any of you who have publicly disagreed with me find yourself in the same situation, I will be by your side or at your back saying what I am now.
I pray that doesn’t happen.
If you have never said or thought anything that may be hurtful to another or inadvertently hurt a friend or loved one, please comment, and show us all how that is done.

Putting Your Affairs in Order

The doctor, after an examination, sighed and said, "I've some bad news. You have cancer, and you'd best put your affairs in order."

The woman was shocked, but managed to compose herself and walk into the waiting room where her daughter had been waiting.

'Well Jill, she said to her daughter, we women celebrate when things are good, and we celebrate when things don't go so well. In this case, things aren't well. I have cancer. Let's head to the club and have a martini.'

After 3 or 4 martinis, the two were feeling a little less somber. There were some laughs and more martinis. They were eventually approached by some of the woman's old friends, who were curious as to what the two were celebrating.

The woman told her friends they were drinking to her impending end.

'I've been diagnosed with AIDS.'

The friends were aghast, gave the woman their condolences and beat a hasty retreat.

After the friends left, the woman's daughter leaned over and whispered, 'Momma, I thought you said you were dying of cancer, and you just told your friends you were dying of AIDS! Why did you do that??'

'Because I don't want any of those bitches sleeping with your fathe after I'm gone.'

And THAT, my friends, is what is called, 'Putting Your Affairs In Order.'

Thursday, February 26, 2009

Thank You

I appreciate the very verbal response from everybody. I invite you all to please view the comments regarding "On the outside looking in" if you have time. I have not, but I did get the highlights.
I am glad for the very public, emotional response.
I'd like you to all know I have the opportunity to moderate responses and comments. I choose not to.

I will say that what we all have in common is that we want what is best for our children.

I will also say, very clearly, to the reader who asked for a public apology.
You are a good person. Those you love, are good people.
I would like you to know, I was not speaking about you, not even a little bit, I was referring to you as a person who assisted during a fit, and as a bystander.
You got caught in the crossfire. My bad.

I also want to thank you all for STANDING UP and saying your side. It's good to hear it out loud.

I made the decision to make my life public to allow those like me who experience what I do the possibility to know they are not alone.

All who comment openly will remain anonymous.

Appointment Day

It’s appointment day!
I don’ think I have ever said that sentence with an exclamation mark at the end. Appointments are usually more dreaded, but not today.
I am actually feeling okay.
Actually, I’m feeling more than okay. I feel downright positive.
Yes, positive, hopeful, strong, fierce, whatever you would like to use to describe it.
Let me tell you why.
I think what I’m doing is working.
I think the diet, the homeopathic regimen, and the chiropractor are facilitating a major change in my body.
Case and point: my low grade fevers are gone!!!
I don’t have them in the morning or in the evening. Previously, my temperature ran about 99.3 and up at these points (during the day, with natural steroids at work, I was usually okay).
A low grade temperature is a hallmark of Hodgkin’s.
Also, I get SEVERE acid reflux has an indicator my body is about to reek havoc on me. I have reflux with pain to the extent that I’ve spent many nights curled over the toilet, “hugging the porcelien,” throwing up or making myself, just to relieve the pain and tension.
I’ve been taking Prilosec 20mg morning and night for this with tums on the side. Now, I’m dropping that to just at night.
Let’s cross are fingers and prayer for this.
I have been experiencing periods of itching, which is a sign of lymphoma (you could see how these symptoms could drive someone crazy since ANYTHING could be making me itch), but I take some benadryl and feel better. I think I’m sensitive, or absolutely allergic, to something.
I have no idea what?
So there is the good news. I have also PREPARED, like a good girl, to see the big guy. I have a list of questions. Here they are:
I need a magnesium/acyclovir prescription.
Oxycodone is on back order everywhere!! Help. (Narcotics are my only pain management option, no Tylenol because it could hurt my liver, no ibuprofen since it could hurt my kidneys).
USC study shows interaction with green tea and velcade?! What is this?
Change pharmacy information
Chiropractor- postural stimulation for my pneumonia WORKED!! Can I do osteopathic liver stimulation?
I talked to Dr. C about Bio 88 and 93. Bio 88 is a homeopathic remedy to facilitate lymphatic drainage and spleen health.
Bio 93 is viruses! It slowly introduces new viruses to a growing system to stimulate a response. It contains CMV (cytomegalovirus)and EBV (Epstein Barr virus). He said he would prescribe 2 gtt BID to 6 month old. Should I take it or stay away?
Was my donor CMV + or – and why does this matter? Dr. M is always asking.
I have constant lower abdominal bloating and cramping with constant pain. I think it’s from the fibroids and cystic ovary found on my ultrasound in Oct. Can I see a gynecologist or do ANYTHING for this?
I lost weight because I am on a serious anti-cancer diet.
This is how I prepare. I try to prepare in writing if I’m able, if I’m not, my caretaker does (thanks mom). I keep a notebook by my purse and write down questions as I think them up during the week so I REMEMBER all of them.
Cross your fingers (maybe your toes and your legs too. I know it might be hard to walk and work). I think we’re all going to have a good day, and maybe, just maybe, I’ll snag a picture today of the infamous Alyea.

Wednesday, February 25, 2009

Time to Buy

Here’s a Hillary Hint about one of my favorite topics, how to shop and shop cheap.
Do you ever wonder how some people just ALWAYS get the “right price” at the “right time,” and come out with some good goodies.
We all know these people. I hope you’re thinking I’m one.
Let me let you in on a car buying secret … .
January is the best month to BUY A CAR.
This is the month that people are hiding inside, all ready sick of winter and dreading the long months ahead. NOBODY is considering trekking around a lot in the cold.
If you’re thinking about buying a car, buy in that month. You’ll usually get the cheapest price and the best rates on loans.
DO NOT WAIT until the weather warms up. Everybody else is going out too.
However, now is special, we’re in a recession. January has passed, we’re now well into February, and there is still not a lot of buying going on.
Miller Chrysler, Jeep, & Dodge, located just off I-89 exit 8 in Lebanon, is having some serious deals: employee pricing, lifetime power train warranty, shuttling around the upper valley area in the future while your car is being repaired.
See the website
This is where I bought my Jeep Compass a couple years back (which, by the way, I love).
The compass is a small jeep (Hillary size) that has a large amount of storage space for the soccer mom sporting equipment and it also boasts decent gas mileage (I average about 30mpg highway).
It navigates well in cities, and at least when I bought, it was a decent price for the four person active family.
And the four wheel drive can handle even me (I like to say “silly boys, jeeps are for girls,” or sometimes, “Silly boys, trucks are for girls” depending on my mood).
Downside, there are some blind spots that need to be dealt with and the gas tank is twelve gallons, but mine is 2 years old, from the first year it came out.
The location helped (South of Dartmouth Medical and less than five minutes away) and the FREE shuttle around town when your car is in the shop was GREAT for FUTURE inconveniences (If your car dies, you will not be missing work, or in my case, if you have a day of appointments at the cancer center, no need to rearrange the crazy schedule. YAY!).
The$2.99 gas guarantee is still there (if that’s what you’re worried about).
But what I like is the lifetime power train warranty. Yes, I said it. Lifetime.
And even better, it’s AMERICAN!! (I can’t tell if buying an American car is in the stimulus package, but I bet they will).
They’ll be accepting trade ins and will assist with financing if you go NOW THROUGH SUNDAY.
Now is the time, historically, with the incoming of a new president, confidence begins to wane at the beginning of Presidency in the dreaded first “100 days” while he proves his efficacy. After this period, confidence grows and the economy begins to rebound.
I’m starting to feel a little more confident about where our country will be by the end of the term.

Outside Looking In

-Invention is borne of necessity

I am Lynette Scavo on Desperate Housewives. Well, mostly Lynnette. She has the rowdy boys. She had Hodgkin’s. She’s thrown up in public places by forcing her body to do things it shouldn’t for her children.
I think each and every one of us has a little Brie, Gabbie, Lynette and Susan, even Eddie (Ssshh, we can save that for our close friends).
The show is talking about how the “playdate” was borne to give moms a break.
Lynette, on this daytime rerun episode, has been ousted from the mother’s play date club.
I’ve been ousted. Mom’s don’t want their children exposed to X’s anger and preoccupation with death.
They all “understand” what a hard situation this is and how his “behavioral issues” have come about. They’re just not able to help and “risk exposing” their kids.
My son has been labeled.
You all may be able to guess what I am thinking, these mom’s are “assholes,” as well as ignorant.
And yes, some are reading this.
Unfortunately, their fear will significantly contribute to the future problems I am trying to avoid. Very few mothers have actually “manned up” and told me their fears.
Upfront, I’m told they’ll do “anything they can” or “our house is yours,” or “you can visit anytime.”
Those words are easy to say, but if you’re the one my son or I chooses, you better be coming through.
Then, after a while, dodging begins, the play dates get fewer and farther between. Moms stop making eye contact with me while talking. Their tones change. They’re always busy. They always have “plans.” They’ll “think about” what we’re going to do and “call me tomorrow,” and then only call my home phone or cell phone depending on where I am.
They are punking out.
They are “just not that into us” friend style.
I can tell you the exact day and time this occurred with a pair of friends. It was the day after my PET scan in January, and I was alarmed by the results and all the nonspoken, sensory information I was receiving.
The kids were playing in the livingroom and we were speaking in the kitchen of an open concept home. I was crying. I hadn’t confided my feelings in anyone else before.
After we spoke, and it was time to leave, X had a problem going. He yelled, he screamed, he hit, he hollered. He called me horrible names, told me hated me, that he wished I would die and just go away.
The father physically carried him to the car.
Learn from me, NEVER EVER think a child doesn’t hear, or sense the tension, when they are in the proximity of a discussion of this magnitude.
IF mom is crying about the possibility that her SECOND transplant fails and that she has NO OTHER traditional, safe, options. The kid will get the vibe.
That’s when the dodging started.
I get it.
Don’t judge, don’t riot, don’t threaten the people. It’s easy to say what you would do when you are on the outside looking in.
However, what is happening is they are in effect “abandoning” my child and taking his friends along with them. He already has attachment issues. This will certainly send the broad message that not even your best friends and people who openly say they are reliable ARE NOT.
Then, eventually, they tell me, usually weeks after I’ve read the writing on the wall, after many phone calls where I give them the opportunity to come clean, that they just “can’t do it.”
For all future people wanting to join my life and influence my child’s, you are either in it or not.
It is not okay to run in like a knight with shining armor telling people how you’re helping and how great it is only to quietly ease up and back out.
You are not a part of the solution, you are part of the problem.
Worse is the labeling of my child. This is a potent issue in small communities. A label can follow you for years. Do not underestimate the capacity of children to feel your emotions towards them.
Yes, he is five, but the other children lean these things from somewhere. My guess is, since their new to school, it’s in the home.
You don’t see that my son comes home and cries because he’s been left out or so and so was mean to him, and did I know that “other mom’s aren’t bald?” He also asks why “I can’t come to class” or “drive him to school” or “live at the hospital.” He wants to know why I’m always “leaving” or “moving.”
I can certainly show you how he cries hysterically at night, like many of you have about my situation.
There is a theory of “self fulfilling prophecy,” if you label a child, they will become that child. They will live up to expectations, even if that expectation is that they are rowdy, angry, and preoccupied with death.
This also lends to a common problem I have encountered time and time again with friends, acquaintances, strangers, and all other people from all walks of life.
They have a very adolescent tolerance for illness. It’s cool diving in and understanding the lifestyle and dynamics, but the reality and stress gets old very quickly.
Dedication is not a three month, in and out style, helping, that is part of the problem.
Dedication is staying by our side through the roller coaster of diagnosis, treatment, remission, relapse, more treatment, etc.,etc.,etc. and not backing down. Dedication is not judging by talking to all your other friends who do not know us, giving your side of what a “problem” this is, then saying how you “understand.” That is gossip. It could turn my family and child into a social leper.
I haven’t backed down, but you would be amazed how many people cannot even tolerate being close on the outside looking in.

X is Losing PART II

How about a round of applause for our current president who understands the theory of preventive measures?!
Yes, Obama knows what I was talking about when I said certain events and behaviors are predictors of future lifestyles and personalities.
I’ll tell you how I know.
First, like usual, I have a contingency plan for Xander. I have one for the whole family actually. The world throws a punch, and I’ve ducked it again.
World 10, Hillary 11. The world should just declare me WINNER now and throw in the towel, because this boxing match can go on FOREVER with life swinging and me ducking.
Well, sometimes I take a hit and fall, but just when I think it has me, I play dirty and sweep its ankles.
I have an old friend helping me out. He’s called himself the “magic maker.” I call him my “super manny.”
I’ll tell you about him later.
For now, let me tell you about Obama, and how I know he understands my theory.
The stimulus package went through rounds and rounds of cuts before it was approved.
The first thing to go was $250,000 to provide free birth control to qualifying woman or families.
Can you understand why this measure would be in a “STIMULUS PACKAGE” in the first place?
Whether you are adamantly pro or con for abortion is not the issue.
The issue is criminal behavior and poverty are strongly linked to the rearing in single parent, young, uneducated, or poor households.
Let me give you an example.
In 1966 Nicolae Ceausescu made abortion illegal in Romania. Previously, Raomania had one of the most liberal policies on this issue in the world.
All contraception and sex education were banned, and if a woman failed to reproduce, she was forced to pay a “celibacy tax.”
Within a year, the Romanian birth rate doubled.
In Dec. 1989, thousands of people, mostly teenagers and college students, went to the streets to protest his corrosive regimen, most were age 13-20 who spread the idea not to fear the government.
If you do the math 1989-1966, the oldest children borne of the abortion ban were 23 years old and younger.
Of all the communist leaders overthrown in the years during the fall of the Soviet union, only Nicolae died a violent death, mostly at the hands of the youth of Romania, who might never have been born without his abortion ban.

I'm not writing a pro-abortion article. I'm talking about choice, personal choice.
If you look at the reverse social cycle, you may think about the sudden decline in crime seen in the 1990s within the United States.
Childhood poverty and a single-parent household are among the strongest predictors of a criminal future in a child.
Another study has shown that maternal education may be the single most important contributing factor to a child’s likelihood of becoming a criminal.
Roe v. Wade, which gave American woman the right to choose, occurred in 1973. In the first year after Roe v. Wade, 750,000 woman had abortions. The number has platued since then at an alarming rate of 1.6 million pregnant woman aborting fetuses yearly.
I suspect this number is grossly underestimated. In the three months while I was visibly pregnant, I had five friends and acquaintances come to me for guidance after realizing an umplanned pregnancy.
Of the five young woman all chose to abort due to factors such as an abusive lover, an unstable economic situation, and a lack of education. All felt haunted by their “ghost baby” and maybe still are.
However, the steep decline in criminal activity also correlates with the timing of Roe v. Wade. The decline started about 1993, 20 years after the ruling, about when the children who may have been born at the most risk would be hitting their criminal prime.
When adjusted for the five states that legalized abortion earlier, in the years before the fall of crime in the other states (1988-1994), these states saw a reduction in crime by 13% compared to other states, and a reduction of 23% in homicides.
Australia and Canada have established a similar link between abortion and crime.
Now, do you understand why people may want access to free birth control in the time of a recession to help stimulate the economy?
However, from an economist’s mind and algorithm, abortion as a mechanism to defend against crime is terribly inefficient when taking into account the possible value of that child’s life and the repercussions the mother (and father) may experience.
However, it is clear that when given the opportunity to choose, mother’s generally make the right decision regarding the possible future of her child in her present circumstances.

Is there a way to stop the abortion cycle?

I do think some free birthcontrol to some key people would ease it up.
For more information regarding this subject, see Freakanomics by Leavitt and Dubner, and Bouza “The Police Mystique. "

Tuesday, February 24, 2009

I'm Going to Throw a Hillary Fit

Health Care Costs To Increase!!
WASHINGTON - A new government report on medical costs paints a stark picture for President Barack Obama, who is expected to call for a health care overhaul in a speech Tuesday night to a joint session of Congress.
Even before lawmakers start debating how care is delivered to the American people, the report shows the economy is making the job of reform harder.
Health care costs will top $8,000 per person this year, consuming an ever-bigger slice of a shrinking economic pie, says the report by the Department of Health and Human Services, due out Tuesday.
As the recession cuts into tax receipts, Medicare's giant hospital trust fund is running out of cash more rapidly, and could become insolvent as early as 2016, the report said. That's three years sooner than previously forecast.
At the same time, the government's already large share of the nation's health care bill will keep growing.
Programs such as Medicaid are expanding to take up some of the slack as more people lose job-based coverage. And baby boomers will soon start reaching 65 and signing up for Medicare. Those trends together mean that taxpayers will be responsible for more than half of the nation's health care bill by 2016 — just seven years from now.
"The outlook for health spending during these difficult economic times is laden with formidable challenges," said the report by statisticians at HHS. It appears in the journal Health Affairs.
The health care cost forecast did not take into account recent legislation that expanded medical coverage for children of low income working parents, and added to the government's obligations.
The report "accelerates the day of reckoning," said economist John Palmer of the Maxwell School at Syracuse University.
"It is bringing home more immediately the problematic dimensions of what we face," added Palmer, who has served as a trustee overseeing Social Security and Medicare finances. "The picture was bad enough ten years from now, but the fact that everything is accelerating gives greater impetus to be concerned about health reform."
The report found health care costs will average $8,160 this year for every man, woman and child, an increase of $356 per person from last year.
Meanwhile, the number of uninsured has risen to about 48 million, according to a new estimate by the Kaiser Family Foundation.
The government statisticians estimated that health costs will reach $13,100 per person in 2018, accounting for $1 out of every $5 spent in the economy.

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More hospitals focus on mind-body connection Chimp victim moved to face transplant clinicHospitals fight to stop new nurses from quitting
Policy makers would like to slow the rate of increase in spending, but that has proven difficult, because American-style medicine care relies on intensive use of costly high-tech tests and procedures.
In a separate report, also due out Tuesday, private researchers looked at spending on medical conditions and found that the most costly were mental disorders — including Alzheimer's — and heart problems.
The White House says Obama believes that out-of-control costs are the main obstacle to securing coverage for all.
"Health care costs are crushing middle class families and the small businesses that fuel job growth in this country," said White House spokesman Reid Cherlin. "President Obama believes that if we're going to get our economy back on track, we have to act quickly to address this pressing issue."
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That's Not Right!

Xander is about to suffer another loss of a person he has come to trust and confide in.
His therapist, Ellen, who he has been seeing since Nov., is officially out of our budget.
We thought our insurance would reimburse her $110 hourly fee (yes, you heard it right, ouch, my wallet is screaming somewhere). To see her weekly we’ve been paying a whopping $440 out of our pocket for months with the idea after the bills were submitted, we would be repaid by the insurance company.
Silly us. Never make that mistake. Once you part with your money, The Big I’s (That’s insurance companies. I like this name. They are all about themselves and they watch over every word looking for a reason to REJECT you) will find a way to keep it.
Four hundred forty dollars a month, to put it in perspective, is more than we paid his beloved daycare provider, Jean, who throughout the years (she took care of Xander from 6 weeks for 5 years old) has become a significant part of our family and Xander’s support team.
We’re paying a therapist more each month than we paid her to keep him safe, loved, and cared for monthly. She also basically potty trained him since I was too sick to do it myself.
Insurance should pay for woman like her.
How about this, we could have a second car.
I think $440 a month is more than I pay for my car payment, insurance, and registration fee monthly. I also dare say that in some months you could add gas to this number.
I also hear, we could have a live in nanny. In the Boston surrounds, if you provide room and board (which we could easily do because of the gigantic house we have that was for my imaginary perfect life that would have filled it with adopted kids), the fee for a live in nanny monthly is $380.
Guess what, that’s cheaper than sending my son off for an hour and more stable. Unless she eats like I do, and I’ve never really met a woman who does, we wouldn’t even notice a dent in our food. I also think the difference between three and four people is nominal.
We have had people stay with us for extended amounts of time to help care for me, Heather and Grace, and neither put a huge strain on our grocery bill.
Well. . . . .maybe Heather since being my identical twin she apparently did get the constant eating gene.
What really gets me and upsets me to the point of tears is when I hear (and I often do) “Can’t you get services for free? Aren’t there options?”
The answer is yes. There are free services out there. They are just based solely on finances.
Since I am married to a man that WORKS, and we have insurance, we will NEVER receive these services free, no matter how much we NEED it for other obvious life reasons.
However, if I had become pregnant without knowing who Xander’s father was or if we were divorced, he left, or was otherwise out of the picture, X would receive free care.
If we were both disabled (and Jon qualifies due to his Crohn’s Disease), we would receive free services.
Jon chooses to continue to contribute to society by working, just sitting, behind a desk.
Due to these socially consciences decisions, we are screwed.
We are penalized by the current system
Now, that I’m done ranting about the money, let me move on to the psychology of this problem.
It’s psyche 101. The early years of development are crucial in structuring the remaining years of one’s entire life. Early childhood sets the themes, the tones, and the patterns that a person will mimic endlessly.
It is the foundation, or the sounding board, for which future ideas about themselves and the world will be built.
Do you think I feel a little bit guilty for getting cancer at such a pivotal age in my child’s development?
For damn sure, but I’m doing the best I can to teach him to cope properly.
However, try to explain this to just about anyone that uses evidence based practice and you’ll get a blank, cross eyed stare.
You mean, you can predict and intervene BEFORE there is a problem?
Yes sir, thank you Freud, for creating psychoanalysis.
According to the combined thoughts of many great theorists, X is at a very impressionable age.
In our specific situation, his newly discovered and partially mature ideas of reversibility can possibly screw him in the future.
What’s reversibility? It’s the idea that if one thing works, another similar action could work.
So, take me and my constant medication taking Xander sees. Yes, it is for cancer and all the ailments that have accompanied my treatment, but all he is seeing is that if I have a problem, I take a pill to fix it.
I take a pill again, and if that doesn’t work, I take a different one, and if that doesn’t work, something else. I do this over and over and over again until the problem is solved.
So what’s the message that X is receiving?
Have a problem, drug it.
I fear that in high school he’ll turn into the “Charlie Bartlett” character from the movie of the same title, who manipulates his psychiatrists into prescribing him medications that he hands out to his high school friends as a glorified drug dealer.
At worst, he could take the current message he’s learning and apply it to himself when he becomes depressed and angry later.
But this won’t happen, because I see it, and I’m doing my best to intervene now even though it’s been difficult to find a provider on completely the same page.
If dealt with appropriately, future MDD, PTSD, anger issues, drug use, and so on could be prevented.
It’s a theory similar to Gleevac, America’s miracle cancer drug, that boosts the presence of cancer without disease.
I want the presence of trauma without PTSD and long term repercussions.
This will be difficult to accomplish, because prevention has not yet been included in evidence based practice.
It’s time to expand the evidence to include clear patterns leading up to diagnosis.
That probably won’t work either, since prevention is unaffordable and good care is also unaffordable.
Here is something to think about.
I worked as a registered nurse in a hospital I can’t afford to get sick in anymore.
That’s just not right.
Here’s another one. Not being able to intervene now and protect my son from a lifetime of repercussions due to his mother’s disease that is completely uncontrollable because I can’t afford it.
That’s just not right.
Imagine the costs he could incur in the future in treatment that may be caused by our current situation.
Now put a price tag on it.
That tag is probably more than what it would take to protect him now, but we can’t afford it.
Imagine the costs the system will incur if he decides to go delinquent and deal drugs, crash cars, etc.
Yeah, those costs, your money not mine, could be saved.
But nobody is seeing the current circumstances that predict future behavior.

Sunday, February 22, 2009

Ugly Duckling

It’s funny how people’s looks towards me change when I transform from cancer’s mistress back into an attractive woman.
It’s like the ugly duckling into a swan.
I imagine it’s like going from black to white.
It’s like Santa saying “Yes, Virginia, you are a hottie.”
Or, maybe, you can look at it in the opposite manner.
It’s like going from white to black (Check out Black Like Me, possibly the best account of one man anthropological research ever).
Or, in the case of so many others like me, going from healthy to sick or young and vibrant to disbled and bald.
I forgot my mask and gloves at home when I ran out of the house today.
Jon, Xander and I were going on a family date.
We haven’t done this possibly last March, when we became very scared regarding our financial situation and our dual upcoming procedures (my transplant and his bowel surgery).
We cut some serious costs prior to July, when I became sick and he underwent his surgery.
We haven’t been out to eat since.
So we went to The Weathervane, a New England lifestyle landmark, for seafood.
I asked to be sat in a back corner, but we still got surrounded.
What I hadn’t anticipated was the looks, the downright stares from some of the men, and the smiles from some of the woman.
Then we went to Best Buy, and while sitting, waiting, in the car, X decides he was to go to the Bathroom. I rush him in with my scarf stragetically placed over my mouth and nose.
We get in, I send him into the men’s room, and I hide outside in a corner, dropping the scarf from my face and dutifully pacing with my cell phone.
Everytime the door would open I would stop and look to see if it was X done with his business.
The first six times the door opened it was not him, but it was usually a man with a very similar reaction.
I look up and think “Oh, not X.”
He looks up and looks back.
I quickly avert my gaze and put my head down.
We lock eyes.
I go to put my head down but catch their smile, and well, it’s just not polite not to smile back. I smile, while putting my head down and maybe peek back up for a second look (I mean hey, I like to look at attractive things everywhere. It’s like art.)
What’s bad is if we catch each other taking that second look. Then I have to quickly hurry back into whatever fake distraction I was enjoying.
These events though, NEVER happen when I’m bald, masked, or gloved.
Okay I wouldn’t say never.
They most often happen between other cancer patients and I.
Usually, I get a glance with a very different reaction. One that’s quickly followed by looking away, trying to remain emotionless and trying not to appear curious, embarrassed that they’ve been caught.
I smile when this happens.
Yes, you’re curious. I know.
Some people stare, investigating the features they can see and possibly imagining the rest. It’s like a man, or woman, checking out the outside to get an imaginary image of what’s underneath.
Others stare with a disctinct curiosity then they’ll wander close giving me glimpses in hopes we can engage in conversation.
This is one of my favorite approaches. I know what you want to ask. I’ll tell you upfront. I’ll start the conversation.
However, it’s a whole lot different than a man looking and screaming “Damn” with his eyes.
That transformation is a very difficult side effect to deal with, not only are you coping with external changes in your body that are downright dewomaizing, everybody is staring.
And that’s not even the largest of your problems, since what is going inside, physically and emotionally, is so much worse.
Those problems are NOT written all over your body, and thus, they are so easy for the outside world to ignore.
It’s easy to think that NO ONE understands, and yes, those who do are those who are sick as well, anybody with a debilitating, possibly life threatening disease shares very similar fears and an understanding nonpareil to a healthy person.
Coping for an ill person needs to address the huge changes in EVERYTHING. It’s an entire life change in the span of minutes.
One minute you’re healthy and vibrant, you’re the “new talent,” then you’re the “sick girl.” People start referring to you as “That poor girl with whatever.”
In some cases, you become notorious for your disease and your suffering. Your story becomes almost an urban legend before you ever open your mouth to a stranger or even an acquaintance.
The whole process is obviously intimidating, and possibly paralyzing due to fear.
I hope you can all remember this next time you are faced with the knowledge that anybody has been diagnosed with a serious illness.

Fixing Nursing 101

One in three nurses will leave their field within a year of entering it.
Not only is the nursing shortage chronic huge news, but nursing retention is also an issue.
I don’t get why these issues are mysterious. In my world, the shouldn’t be making the news.
They should be solved, by some common sense.
First, 1 in 3 nurses leave the field within a year because the field is nasty. I’m not talking about between patients and nurses, I’m talking between nurses and nurses, nurses and doctors, nurses and pharmacists, the list could go on and on and on.
I was told upfront when I was hired at the first hospital that the nurses there “Eat their young.”
Yes, that’s what they say. You’re warned before you even enter the field. You’re screwed in many ways.
Your preceptor, your coworkers, the doctors, whoever, will treat you like an idiot and make you feel as bad as possible for screwing up. You’re expected to do tasks that can really only be fulfilled by a supernurse.
Then if things go wrong, watch out, get your gloves on, round one has officially begun.
Not many people can deal with this high pressure culture over a period of time. I was lucky I dealt with it in business, sports, and life before ever entering the field.
My final preceptor in college told me I was an idiot and would never be a competent nurse then later the same day asked me if I was first in my class (I was), he said he could tell by the answers I gave.
Talk about mixed signals.
As with everything, this wouldn’t be such a mystery if you would just ask the people you’d like to replicate what would entice them. Go ask the nurses if you want solutions to these problems.
As far as the nursing shortage is concerned, To teach requires taking a significant pay cut. Salary to oversee the nursing program at an area community hospital is $33-45,000 yearly. A masters degree is required.
That’s poverty for a masters degree nurse. As an RN starting pay on a medical surgical floor in the Bronx offered me $82,000 a year for 36 hours a week, three twelve hour shifts, not including time and weekend differentials. Not including overtime.
Nursing is sounding better isn’t it?
If I wanted to work in the ER, starting pay was $90,000 base, upgraded as “combat pay” since the same ER did require 6 guards with guns and bullet proof glass.
An RN with a masters makes more, $45,000 is downright bad.
Nurses with a master's degree, which can qualify you to be a nurse anesthetist ($150,000+ salary), a family nurse practitioner, an acute nurse practitioner, or any specialty in any area of medicine pays much better, with a lot of the perks of being a doctor (you can have your own practice), but without as much responsibility (such as call hours).
Whoa, damn, isn't that sounding good?
Also, medicare.medicaid reimburses 90% of the cost of a nures practitioner, where MDs are much more expensive and do not have the same high reimbursement percentage.
Where do you think the medical trends are heading?
So who teaches? It’s either those who love it or those you can’t work anywhere else.
We could have bottom of the barrel employees teaching our future nurses.
New nurses may come out of college bad, but many nursing schools try to prevent this by “screening” out the weak ones through vigorous academics (less than a 72 fails in some schools), often fail 1/3 of the class.
That’s 1/3 of the class every semester until graduation. I didn’t graduate with a single person I started with.
Then, if they’re still emotionally weak, they go to work unprepared to be met with nastiness from their colleagues.
When people acted up about teaching me, I would remind them of my age and then their own.
I would tell them that I had forty more years in the field while in forty years times they would probably be in my bed so they should teach me properly now, just in case I get my hands on them in the future.
They did put in more effort when reminded that I was the future, possibly THEIR future.
How do you get more nurses into the nursing field?
Pay more for teachers, hire more teachers, and open up slots. Most schools have a significant waiting list.
Start early in middle school educating on the perks of nursing. Talk about travel nursing, nursing salaries, the possible lifestyle they could have, and the working environment in terms of all the hot smart people they’ll be socializing with.
In high school, potential nurses should be recruited, just like sports. Offer scholarships, housing, stipends, or pay for college up front in exchange for signing contracts to work after college. Support people upfront and if they come through, you’ll own them later.
Advertise that federal loans are waived if you graduate and pass your boards. Federal loans for nurses function like scholarships. Everyone in high school should know this.
There are also federal scholarships available if you vow to work in a certain proximity or region for a period of time.
An intelligent person can get through nursing school almost for free.
This information should be in big red letters whenever nursing schools are advertised: Nursing School is Free!
That’s advertising. Then have a damn good guidance counselor or Financial Aid Manager to show them how to complete the process. Or just create a damn packet to guide the student. Make sure you put based n scholarship, academic performance and financial need in small letters on the bottom of that ad.
Out of school, I was offered loan repayment options, yearly education money and so on.
Where were these offers when I needed them?
You can lock in a nurse before they ever complete school. Nursing students are just as broke, desperate, and struggling as anyone else, pay for them during this period with a contractual agreement.
Send young attractive professionals to talk up the profession.
The image of nursing needs to get an image overhaul. It’s seen as frumpy and classless. It’s a thankless job.
Easy enough to change the image, show the glamour of it. Flip the script. Nursing is not just your grandma’s job.
It can take you all over the world and put you in posh areas. It can support a family on its own. You want a white picket fence and a nice cape with a dog, it’s yours.
I worked with one nurse that supported her boyfriend and family on her night nurses salary. She was twenty at the time.
Want a big flashy car and stable recession proof job? Go into nursing.
Hospitals are willing to hire anything that walks and breathes with a nursing license.
But nobody ever hears this.
They certainly should.

Friday, February 20, 2009

Wash your damn hands

Thank Dani for this one. Keep praying for her pancreas to come in.

During an hour's swimming at a municipal pool you will ingest 1/12 liter of urine.

In an average day your hands will have come into indirect contact with 15 penises (touching door handles etc.)

An average person's yearly fast food intake will contain 12 pubic hairs.

In a year you will have swallowed 14 insects - while you slept!

Annually you will shake hands with 11 women who have recently masturbated and failed to wash their hands.

Annually you will shake hands with 6 men who have recently masturbated and failed to wash their hands.

(Okay, think about this. Either woman are masturbating more than men or woman are just not cleaning up after).

In a lifetime 22 workmen will have examined the contents of your dirty linen basket.

At an average wedding reception you have a 1/100 chance of getting a cold sore from one of the guests.

Daily you will breath in 1 liter of other peoples' anal gases.


...and wash your damn hands

Grey’s Anatomy has Nothing On Me Part Deux

I said it once, I’m going to say it again, Grey’s Anatomy has nothing on me
Izzy is currently getting diagnosed with cancer.
I’m enthralled. I’m in awe.
It’s like watching myself on a tv show.
I can say, and if you missed the show you probably will not get this, that I wouldn’t have entrusted my test results to the dumbest resident of the bunch.
My blood and results are vitally (HA, just me being punny again) important.
I try to remove as much of the margin for error as possible, and that includes who I trust with IMPORTANT tests.
The whole shocked, blank face she made, ME.
The angry disposition over a work related situation, that was ME!
Then wandering, teary eyed into a private place to deal with my shock with some solace, poking through the nodes in the lymphatic system that are most likely effected, that was me too.
Yes, the way they portrayed the reaction of a practitioner that diagnosis a terrible disease in themselves, absolutely accurate.
If Izzy was me, she is going to run to her scan results and then have a break down.
Her colleagues are going to tell her it could be something else, like sarcoidosis, and she’s going to think, “I’m fucked because sarcoidosis is the good option.”
She’ll be well cared for internally. Everyone will look out for her.
However, Izzy lives in TV Land. She found out she has cancer five minutes ago, and she’s all ready in the clinic being called to an appointment.
And you know what, I’m in love with this episode, since her doctor said the SAME THING I heard so many times “It’s just a worry, you know how it goes with patients, we see people through this all the time. It will be in the past tomorrow” or in my personal experience, their words were “paranoid,” “hypochondriac,” and “second year syndrome.”
Second year Syndrome is something that second year medical students often experience when they start to wonder, and become very nervous, that they have EVERYTHING, since symptoms for illness like lymphoma are insidious. It’s a syndrome of knowledge. You have enough knowledge to know the problem, the symptoms, the diagnosis, and treatment modalities, but not knowledgeable, or not distanced enough in perspective, to know you don’t have it.
In reality, the process from suspicious to biopsy takes a while. There would need to be a biopsy. I needed to make an appointment for a consult. There Izzy would discuss with the surgeon biopsy options, such as needle aspiration vs. an actual incision with the entire node (or mass) removed.
Then surgery needs to be scheduled, and after that, the tissue needs to be sent to pathology to be analyzed. Once it is analyzed and she is “officially” diagnosed, she will be referred to a Doctor specializing in hematology.
I say “referred” since this is very different from actually getting an appointment and seeing the doctor.
I was very blessed and the whole process I just described only took a couple weeks.
Then, upon meeting your hematologist (feel free to reference the first “Grey’s Anatomy Has Nothing on Me” from September to meet Dr. Gautier), you discuss staging and possible therapies.
Staging took four weeks. It can be done more quickly, but Hodgkin’s lymphoma is a cancer that can be left, safely for four weeks to take time with staging.
Also, I was in no rush to head to chemotherapy. I was scared to death of chemo.
I’ve been a LIFE LONG CANCER PHOBE, specifically of blood cancers (leukemia) and bone marrow transplants. The form of treatment I’ve accepted I’ve been scared of since childhood in the same manner I’ve been scared of serial killers or getting snatched from somewhere and sold as a sex slave to Africa (no need to question the last fear, I’ve heard it happens).
What Izzy is doing is what I also did, poorly faking normalcy, and nobody is noticing the change, just like I did, for 5 whole days.
That’s as long as I could hold out during the diagnosis PROCESS. Actually, that is as long as it took to get a CT and have it read by a radiologist.
I want you to know that diagnosis is a process, and it is just as scary from the very first time you see your primary care provider about your suspicions (for me it was visible masses in my neck and an inability to lay flat due to pressure causing difficulty swallowing and breathing) as it is when you finally get confirmation and then meet your new doctor.
The fear does not lessen at any of these points. It continues and changes in character, but it doesn’t leave.
It’s important for friends, family, and anyone who wants to be supportive to know this. Do not get in petty fights with your friend at this time. Do not undermine their fears. Do not make any demands of them, the stress will break them.
In life, you really never know what someone is going through. I’ve found it’s wise to treat everybody like their on the edge of a nervous breakdown.
I’m happy primetime, big time tv is addressing this issue, and I need to thank Addison (a character) for leaving saying, “No need to thank me, just kick ass.”
I am going to kick ass.

Thursday, February 19, 2009

Ripping my hair out

I’ve been under some stress this week.
By some stress, I mean, if I hadn’t just regrown my hair, I’d be pulling it out.
X is on vacation. I am not able to take “mom trips” to public places.
I’m really not even able to set up play dates.
This has been one of the worst cold and flu seasons on record. Everywhere but my own home are a potential threat.
Due to my previous acute problems of pneumonia and gastroenteritis, I can’t really run around, go sledding, and play basketball.
From a writing professional point, as a default side effect, I’ve also been hitting up my unpublished folder a little bit for my postings.
Sorry, but if I get too sick from too much stress, there will be no more baldies’ blog at all!
That just sounds really sad all around. I’m hoping soon, life will stop being a tornado and settle into the whirlwind I enjoy.

Hill Update 2/16/09 From Vic (aka Dad)

Hi to all
It has been over a month since my last update so I thought you might like to be brought up to date. On Jan 12th Hillary had here PET scan. The doctor read the scan and told Hillary she was in Remission. Hillary and Nancy read the doctors face, then looked at the scan. It shows 2 odd spots, 1 on the liver. The scan says they are not Cancer but They are suspicious. After a few weeks of discussion and a little depression we have come to realize that our positive attitude has gotten us this far. If we give in and start believing it is back then We all start to have a pity party. That was bringing us to an all time low. Hillary turned to the computer and researched some alternative protocols to do. Most of it is a new diet and getting off some of her meds. She has a team of doctors that have agreed to work with her. This will give her a 3 month head start on a treatment plan if the cancer does come back. We really don't know anything for sure. We were letting our minds wander She has a better attitude now and has her spunk and fight back. We were all very low for a while. Hillary got out of the funk by inviting some of her college friends up for Charlestown Winter Carnival. If you haven't seen a broom Ball game you have to see it for yourself. Slick ice, sneakers, kitchen broom, soccer ball, and goals. While she was out at the carnival, that killer smile was back. Even though she was diagnosed with pneumonia and caught it early in the weekend her fight was back. Her team lost both games right off and were out of the tournament but she was back. I have not been able to write for a couple reasons. Fairpoint bought out Verizon in our area. Notice my new address. I have my regular computer that still is not working after 2.5 week. I've been up in the middle of the night many times in the last month and just can't find the right words on my work computer. I've got to say that it has been an emotional month. I think we are back to loving life and the good people that we know. I have been carried by my friends this month. The article below helped Hillary look at herself from a new perspective. I have attached it if you have time to read it. Hope life is treating you all well. Look at the bright side!! Sometime you have to look harder to find it. The article below was posted on another blog. If they only knew she is 110 lbs soaking wet. Linda Keenan really figured Hillary out. She has spunk!!

Linda Keenan is a former CNN senior producer. Posted February 11, 2009 09:15 AM (EST) BIO Become a Fan Get Email >> Alerts Bloggers' Index>> Meet Hillary, Cancer Warrior Princess

Read More: Baldies Blog, Cancer, Hillary St Pierre, Lymphoma, Living >> News>>>>>> Show your support.>> Buzz this article up.Buzz up!

I'm hoping Hillary St. Pierre likes how I present her post, because I'm afraid that if I piss her off, she'll come and give me a beat-down. I don't know Hillary; I've only emailed with her a few times. But my guess from reading her blog is that she was a fierce creature well before cancer launched a terror attack on her a few years back.

One of my dearest friends was diagnosed with non-Hodgkins lymphoma 16 months ago, and in my web wanderings through cancer-land, I recently arrived on Hillary, a 26-year-old mother of a 5-year-old named Xander. She writes Baldie's Blog and to get an idea of what she's been through, here's her accounting.

"Diagnosed: April 2006 Hodgkin's Lymphoma May 2006- ABVD Therapy >> Sept. 2006- ASHAP Therapy>> Oct. 2006- ICE Therapy >> December 2006- Mini Beam therapy January 2007- Syngeneic Transplant(from my identical twin) Feb. 2007- Lungs fail, my family is told I will not survive. March 2007- I WAKE UP and throw a party!! June 2007- Radiation Therapy August 2007- Cancer Reoccurence, Radiation Therapy Feb 2008- Reoccurence. Radiation therapy, Biopsy, and an allo transplant recommended. April- Second opinion, Sloan & Kettering. Looking into alternatives. May- Third opinion at Dana Farber. Sign on to their care. July 2008- Start trial drug- LDH My husband undergoes surgery for Crohn's disease silmultaneously which finds carcinoid tumor September 2008- FOUND A DONOR!Transplant is postponed due to shingles infection. October 2008- Admitted to Brigham & Women's for a "mini-allo" transplant. Mid-October 2008- Move out of Hospital to nearby Hotel."

Her latest scans showed more cancer and right now, Hillary's status is this: "Researching like my life depends on it :)".

What amazes me about her blog is how raw and real and fearless she is: when she's depressed, disappointed, exhausted, terrified, angry, she's not afraid to say it. And despite the terrible setbacks, she keeps plugging ahead with what she calls "Plan Y".

But it's her role as Mom that interests me the most. In a time when it's a sort of vogue to declare yourself a marginally "Bad Parent", Hillary is intense about her desire to educate her son Xander, herself, despite her condition. And with this post from Baldie's blog, it's clear the education goes both ways.

Republished "Live like a Stilleto."

Wednesday, February 18, 2009

If it looks like a duck

If it looks like a duck and it walks like a duck and it talks like a duck, it’s probably a duck.
Here’s the old adage, maybe you’ve heard it before, if you haven’t, you’re hearing it now. Let me flip the script and twist it for me.
If it looks like a quack, talks like a quack, and costs like a quack, it’s probably a quack.
Yes folks, I’m researching alternatives and the very clear topic of quackery, and worse, fraud, have come up again and again.
There are no formalized measures for a patient to safely navigate the web and the world in search of information.
You are on your own: the patient, the family, the friends, the spouse, and the supporters.
If you’ve been where I’ve been, if you’ve loved somebody like me, or even if you’ve heard the urban legend stories of a cousin who has an uncle whose stepdaughter knows a guy that did this, you probably know what I’m talking about.
The CURE for Cancer is EVERYWHERE, but somebody is hiding it from us. Big time conspiracy theory heard around the world.
And you know what, it is partially true. The system, specifically the economic principle of “supply and demand,” is partially to blame. “Information asymmetry” where an expert is relied upon solely for information, which can lead to greed, is to blame also.
But mostly, when you get down to the bare bones of it, greed is to blame, and it exists everywhere including big pharm, the insurance industry, the health care field, and yes, also in miracle cures.
Yes, there are medical professionals who seize on desperation to make a buck. I think these are the worst type of people of the bunch. It gives me chills to think about them. Their actions, to me, are so evil they are beyond my understanding. I can’t wrap my mind around this type. They scare me.
Here is one of my examples. I was referred to a NY doctor by a very trusted friend and confidante, but when I researched into the man, I became incredibly suspicious, despite the referral, due to his practices both professionally as a provider and his choice of how to structure payment.
Word to the wise, if they say they can treat you over the internet, they are probably out to rob you.
This will emerge as a trend. I only know the one who practices this now. For $297 you can get his opinions without ever speaking to him by filling out a questionnaire (you have to pay to even see the questionnaire). If you need to, for some silly reason, speak with him. The price is $350.
I would love to see what this is, but it’s too large of a price for me to do it for my own anthropological research.
This doctor sells manuals of cities with major cancer centers for $20 a piece. Don’t buy it. I think he’s a profit monger. I will mention some suggestions like his, of my own, SOON.
I’m going to start posting my alternative health information on my new blog, Health, Healing and Herbs so I can share with you my information I receive from so many people all across the world. I hope to bring the best of the cultures together.
And one last reason to believe you can find a doctor, just about anywhere, to do anything, if you speak the language, Newsweek recently ran an article entitled “Not Just Urban Legend” on organ trafficking in its January 19th issue. It’s about the research of Nancy Scheper-Hughes who spent more than a decade wandering the world to understand this substructure of health as an anthropologist from the University of CA, Berkley.
I’ve always thought UCLA Berkley of the best schools for anthropology, and speaking of urban legends, what you have heard about the “Acid Tests” are true. I’ll tell you about my college roommate’s father sometime.
Nancy’s research led her straight back to the United States, where surgeries with stolen organs most commonly occur.
Shock yes, true yes. I believe it.
I’m ambivalent about these doctors. I don’t think know if anyone will understand unless you have felt the desperate need for an organ, including the immune system.
That’s one for the ethicists, not for the loudest, most publicly popular opinion, but what I’m saying is this, crazy alternatives exist everywhere. The trick is to sift through the scientifically realistic practitioners and the greedy ones.
I’ll help with a list of tips to be aware of. Just remember, if it “looks like a duck, it walks like a duck. . . . .”

Tuesday, February 17, 2009

Just Cool

“Some people are just COOL. And you are one of those people.” –Jane Owen
I want to give a big thank you to Jane Owen for posting this comment that made me grin ear to ear. It’s so simple, and yet, so touching and amusing.
I’ve wondered about this “cool girl” anomaly for a while now.
I probably really started wondering after college, when I entered the working world, and my co-workers asked if I was the “cool girl in high school?”
I wasn’t.
Not a chance. Not even close. I was just me. Cool was not something I was aspiring to be.
I was aspiring to be generous, understanding, compassionate and still successful, and cool, well that just didn’t come along with that territory.
The “cool girls” in high school didn’t seek these traits the way I did.
I’m sure they do know.
Life moves on and high school IS NOT the end all be all people seem to make it out to be.
Really, it was only 3.5 years of my life. I certainly never wanted my life to peak at 16 years old. If that had happened, it would all be down from there.
I was always just me and never considered myself “cool.”
I figured I’d just let everybody think of me the way I was talking about. I think the words “Hotshit” or “snobby bitch” were used a couple times, but I just let it roll off.
In college, maybe I was the cool girl. I never thought about it. I just ran around talking to the people I could talk to and gaining as much understanding from them and their cultures as I can.
Clubbing weekly all over Westchester and Manhattan was a perk, but there was plenty of down times between classes, studying, and partying.
So cool wasn’t on the top of my list. My life was at the top of my list. Trying to finish school so I could make a living and give my child the life I had was at the top of my life list.
The coolness factor, I have to contribute to my friends. They up the coolness quotient for me. I never thought that maybe I upped the coolness quotient for them. That would be crazy.
Then out of school my co-workers INSISTED I was the cool girl in high school. I said absolutely not. I was unique, but not cool or popular.
I wouldn’t want to be pigeonholed or stereotyped. The cool girls at school were kind of mean, and I was having no part of that.
If they meant “cool” as in friendly, down home girl. Then I was a cool girl. If they meant “cool” as in up on the latest trends, lingo, music with the most friends that wouldn’t have suited me either.
I am cool in the manner that I know who I am and I know what I like and I like to spread the wealth. I certainly think everybody else should be happy and chill like me.
Whatever works for you makes you cool.
I just happen to like people. I like everything about them. I like the way they look, they way they talk, the way they live, the way they move, and the way their face changes when their thinking something they are not saying.
All that is interesting to me.
I’m cool because I like people, and they like me.
It’s very difficult to deny somebody who has been nothing but good to you. I guess that is how the “cool” girl label got around to me.
And all you reading today should thank all the people I deemed “cool” and admired for reciprocating the compliment since when I started writing, I went through the whole, would anybody really want to listen to what I’m saying? And I thought, I do live kind of an interesting life. I certainly amuse myself.
But I wouldn’t have been able to put myself out on a public forum and let EVERYBODY know what I do and think daily if I had not been shown some love and given the compliment a couple times that I was just “so cool.”

Steps to keep a healthy level of insanity

Healthy Level of Insanity
1. At Lunch Time, Sit In Your Parked Car With Sunglasses on and point Hair Dryer At Passing Cars. See If They Slow Down.

2. Page Yourself Over The Intercom. Don't Disguise Your Voice.

3. Every Time Someone Asks You To Do Something, Ask If They Want Fries with That.

4.Put Your Garbage Can On Your Desk And Label It "In."

5.Put Decaf In The Coffee Maker For 3 Weeks. Once Everyone has Gotten Over Their Caffeine Addictions, Switch To Espresso.

6. In The Memo Field Of All Your Checks, Write"For Smuggling Diamonds"

7.Finish All Your sentences with "In Accordance With The Prophecy."

8.Don't use any punctuation

9.As Often As Possible, Skip Rather Than Walk.

10. Order a diet water whenever you go out to eat with a serious face.

11. Specify That Your Drive-through Order Is "To Go”

12. Sing Along At The Opera.

13. Go To A Poetry Recital And Ask Why The Poems Don't Rhyme

14. Put Mosquito Netting Around Your Work Area And Play tropical Sounds All Day.

15. Five Days In Advance, Tell Your Friends You Can't Attend Their Party Because You're Not In The Mood.

16. Have Your Co-workers Address You By Your Wrestling Name, Rock Bottom.

17. When The Money Comes Out The ATM, Scream "I Won!, I Won!"

18. When Leaving The Zoo, Start Running Towards The Parking lot, Yelling "Run For Your Lives, They're Loose!!"

19. Tell Your Children Over Dinner. "Due To The Economy, We Are Going To Have To Let One Of You Go."

20. And The Final Way To Keep A Healthy Level Of Insanity........ Share this.

Monday, February 16, 2009

Hair Identity Crisis

Got My Spunk On

Dirty Girl Coping

My restrictions have taken away some of my serious coping mechanisms for my anger.
Offending restriction #1: No construction.
I take this as no destruction also. Construction, or just plan old destruction, is a favorite outlet for my anger.
It’s in the blood and has been for generations.
Pepere (my grandfather) would take out a bulldozer and make trails for hours. He did this until he was placed on hospice for lung cancer, but for years prior to that he suffered from narcolepsy. He would fall asleep at the wheel of his bulldozer on the top of my father’s property, but nobody would tell him he had to stop. He started his excavating business. He built it up, and if he wanted to go out asleep over a cliff in his bulldozer, then none of his offspring were going to tell him he couldn’t.
Not that we could have anyway.
My father takes out the excavator, tractor, or chain saw depending on the situation.
I have done, and would like to continue to do, the same.
I like working with big, heavy equipment.
I think most grown woman do, no matter what they tell you.
I know. I know. I’m a dirty girl, and I mean dirty in the most literal way. I like to play in dirt and mud.
That’s all I was saying. If you thought it was something else, clean up your dirty mind.
There is just no feeling like tearing something down and building it up better.
But since the restrictions, I’ve been relegated to using my jeep as a toy all winter.
I turn off the four wheel drive, speed down my road, slam on my brakes, and fly around the corners.
I did that until I ended up in a snowbank.
Ok, I’ll be honest, that is not what dissuaded me.
I did that until I thought I loosened my wheel, or worse, bent the frame from bouncing off the snowbanks.
I thought my fun was free and harmless, but THAT would have been an expensive.
My car’s problems, the severe shaking when accelerated above 30mph, were due to dirt. Please thank the good men at Lambert’s Auto in Claremont for checking it out and cleaning it up.
This is a family business. They sell jeeps and dodge vehicles. Go buy there. I trust their people. I trust their service (Hi Uncle Lou), and they take good care of me.
So now, I’m looking for an alternate coping mechanism, maybe one that is not so dirty (but I doubt that), but certainly one that is not possibly harmful.

Sunday, February 15, 2009

V-day Respect

Sorry for the lack of posting yesterday, I decided to give Valentine’s Day the respect it deserves and. . . . . ignore it.
I’m making up for it today, the 15th, by having some solid girl time.
Yes, girl time, Hos before bros. I'm chilling with those woman that will always be there to hide the shopping bags from my husband or come over for a cup of coffee if I want to talk.
If the cup of coffee doesn’t work, they can always come over for a bottle of wine and help plot my revenge.
I shouldn’t be calling myself a V-day hater.
My first present from a boy was in third grade, it was a heart pin that said “Be Mine” from Jamie Dansereau, my first “boyfriend” ever.
I still have it, because I’m sentimental that way.
And I think this is about the age where the problems start between girls and boys, since at Lexi’s practice yesterday, the girls were out for blood. Almost every single girl had to be pulled and spoken to about their aggressive behavior.
But did that stop them. Oh no. They all got together and asked to scrimmage so they could scratch at each other, pull hair, and hit arms legally, or so they thought.
It was a big no to that question and they finished the season out with shooting drills and lay ups, anything that did not require defense and the opportunity to kill one another.
I can only imagine they were irritated with the hormones of preadolescence and the irritation that their little boyfriends not only did not call, but just did not get how important the day was.
If I gave them an announcement, it’d be to tell them to get used to it, ladies. If you want something from a man, you need to be clear and concise, all those hints, looking pretty, and batting eyes just don’t completely work.
If I could go back in time and change history, I would have the cave women clubbing men over the head and dragging them into flower patches or to the garden to gather food for a damn good meal.
The entire species may have died if I was in charge, because I would’ve convinced all the other cave women to hold out on the goods until the men got it.
But this isn’t how history went. This isn’t even how the present goes, except sometimes, and then those guys turn out crazy anyway.

I did get a romantic "sweep her off her feet" gesture one year from Jon. My freshman year of college, he arranged for me to have a dozen roses of all colors arrive every hour one the hour for 6 hours.

Was I ever the talk of the all girls college, and my roommate, Cheryl, was celebrating too, since they were delivered to the dorm and when I was out she got to run and get them. The whole floor smelled like flowers, and even the "coolest" upper classman, who already had labeled me "J. Crew" for my looks, now decided I was as much of a diva as I was hot and were all tracking me down to hook them up with a man as fine as mine.

Some insisted it was the white thing, but I set them straight, men of all cultures can be very, very good, but they can also be very, very wrong. See my case and point "husband of the year awards below."
Despite these couple fond memories, I’m celebrating with my girls and we’re going to see “Confessions of a shop-a-holic” and bond over our womanhood.
I think I may call Lexi to join in too.

Friday, February 13, 2009

Mini me and me

After two and half hours in the car to get to Dana Farber, I jumped out of that door like Seabiscuit running out of the gate, only to stop in my tracks as soon as I got on the curb and STARE at the cutest little mini cancer patient.
She was a mini, and I mean tiny, version of me. She had a cute little mickey mouse mask and a pink bandana. She was wearing her spring coat with a little dress and tights and cute Mary Janes.
And there I was, in my tights, pretty dress, red spring trench coat, and yellow mask resisting the urge to inappropriately run and snuggle the most adorable patient I had ever been.
No, I could not be one of those crazy people. Not today.
I was going to look away.
Mom caught me.
She’s going to think I’m a freaky sick kid snatcher I thought when I met her eyes.
But instead, she smiled, wide and bright. Maybe she thought I looked like the big healthy version of her daughter, while I was thinking her daughter looked like the mini healthy version of me.
Either way, I got the mom “okay” glance to talk to her child like an adoring aunt, or maybe, from her perspective, the “cool” older sister, since she probably gauged that I was about 16 years old like most people.
That is the way to step out, people.
I knew my appointment and day would go okay and I would NOT have a repeat of my appointment extravaganza from two weeks ago (has it been that long all ready?) when I almost had several crying breakdowns from people sneezing my way and irrationally took out my man hating anger on my doctor.
No, not today, it just would not be that way. It was a good day.
And it was okay, except for the little wait I had to endure where I tortured myself with the latest issue of lucky, which is more like a catalogue showing me the cute upcoming styles for spring that I will not be buying, than a magazine.
Lucky me, I’m frugal and vogue. I know how to get those looks. They’re called high end thrift shops, vintage shops, second hand stores or garage sales. The lace, the embroidery, the flowy hippie look, it has all been around before. Those fabulous blazers that you can pair them with for that I-am-trendy-young-cute-and-yet-so-professional look, you can get those second hand or on clearance too.
Can’t stomach the second hand thing even if you have a great dry cleaner or know how to bleach. Score the clearance racks.
My favorite tweed blazer with suede elbows was 5 cents. The two times I’ve had it dry cleaned has cost more. For 5 cents I can go out with the ladies to a place with no coat check and ditch it.
How about that for wild abandon? FYI- Tequila does make my clothes fall off. I should really come with a warning, something tattooed that maybe says “Do not add alcohol.”
Anyway, that aside, my vitals and my labs, again look fabulous. From those, I appear to be in perfect working order.
My lungs are still snap, crackling and popping from my weekend battle with pneumonia and my stomach was still a little touchy from the gastroenteritis (did I tell you I had both?), but otherwise, well hydrated with, clearly, a semi-functioning immune system that just needed the aid of some antibiotics.
I did spend my day hand glued to my water bottle. Can I hear some words of encouragement about how GREAT it is that I’m sticking to the 51 oz. of fluid per day goal? This is a hard on for me. I’ve never before been one to drink A LOT unless the beverage had alcohol, then watch out.
But those days are over, because I’m on a health kick, and that Hillary, that girl, being shelved for a bit.
And so the good stuff went on, I booked TWO appointments at the Zakim Center for acupuncture, which I’ve really been wanting to try but hadn’t had the luck to ever get an appointment.
Guess what. Now I do have that luck. My luck has changed. I’m now on the good side of it. It was time. Not just because I deserve a break, but because science says so. Statistically speaking, as many bad things that happen to me should not ALL be happening to me. It’s the law of averages. It’s science. Bad times should be over.
I also found FREE BOOKS for Xander at the Blum Center through the Light One Candle Campaign, which provides reading materials to the children of cancer patients to encourage a continued bond and relationship through reading together.
I had never heard of this cause, but I like it.
Then, I found a flier advertising DANCE CLASSES that facilitate lymphatic drainage. I dance. I love to dance. I’m all about my hip-hop to keep me in shape, but knowing there is the possibility that I could dance and coax my lymphatic system into draining the nasty defunct cells I have instead of letting them accumulate into tumors, now that is a concept I’m in love with.
Melissa said a cautious “No” to the next two medications I suggested in my experimental regimen, which contain viruses (such as CMV, EBC, herpes simplex and zoster), and I agreed. I don’t think I’m satisfactorily educated on why I need these. So they are being postponed. Next up I’m bringing in Thymex to recruit the production of healthy cells.
A PET scan is tentatively scheduled for April. Before it was set for June, for no other reason than Alyea said so. Melissa and I discussed me taking a one time Xanax dose, which interferes with the uptake of the metabolite used into brown fats which may cause a false positive reading. Dartmouth does this as part of their PET protocol. We’re instituting this so we can be ABSOLUTELY SURE what they see on the scan is either brown fat, a viral inflammatory pattern, or cancer.
Hopefully, this will verify whether I am in remission or not and guide my course of treatment. I’ll wait until after this test to book any trips to Germany or anywhere for more treatment.
Maybe diet, supplements, faith, and prayer are all I need. Strike that. I’m pretty sure faith and prayer are all I need, but I’m not being stupid here, God helps those who helps themselves.
Finally, I am officially weaning down on my prograf. I’m now a 0.5 mg girl. Right in the nick of time too, since we’re doing are taxes and we have paid $1200 in co-pays to medco alone. I can’t wait to finish our taxes and let everybody know exactly how much health care can cost, even with the insurance.
I’m not sure how I’ll respond, but I’m getting the feeling it’s going to be a start-a-riot-over-the-injustice number, or at the very least, scream and holler and push harder to start a revolution to enforce the granting of our civil right to health care under that little statement in the constitution that states we have a right to “LIFE, liberty, and the pursuit of happiness” number.
I’ll tell you right now, I’m not feeling supported in the life department by our government and I’m certainly NOT pursuing any happiness since this is so intricately tied to my HEALTH (it’s hard to enjoy yourself when you can’t breathe, I’m just saying).
I’ll let you know when the numbers are in.
Have a happy Valentine’s weekend.