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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Tuesday, March 31, 2009

April Fool's Prank

First things first, Health Care Professionals, DO NOT, create a new fake policy or an extra piece of ridiculous paperwork to fill out on admission and post a memo from the unit manager in the staff room requesting immediate implementation.

This will get you in trouble. Take it from the girl who may, or may not depending who you are and why you're asking, have experience with this prank.

ADMINISTATION: Try not to allow your employees to get so bored they come up with these ideas. Intelligent people with sick senses of humor and idle time are dangerous.

Here are some April Fool's pranks that could be relatively harmless fun:

1. Get up really early and sneak into your victims bathroom and fill their hair-dryer with baby powder. And when they turn it on, their head will be pure white just like an old person!
Before one of your family members takes shower, remove the shower head and place a life-saver candy in it, replace the shower head with the candy now trapped in it. When the person takes a shower he or she will not notice, until they get out and start to dry off the towel will stick to them they will get back in the shower to rinse off... works like a charm.

2. Find a box about the size of a cake. Then cover it with frosting, making it look like a cake. Then put it out in the office kitchen, or wherever people leave free food. Sit back as one of your co-workers tries to cut a slice.

3. Take an empty coffee mix can and replace it with a can with coffee mix in it. Make sure coffee cans are the same brand, or it will not work. At the bottom of the can put a piece of paper that says April Fools. Make sure you help the person with making their coffee to see their reaction.

4. This ones for all you pet owners! First, put a walky talky some wear near the area of where your pet is laying. Go into another room with the other walky talky. Then, when your brother/sister goes to pet your furry friend, say something like..."Hey Pal! Get your grimy hands off me!" They'll get a kick outta this one!!!

5. Get a small alarm clock and set it for 3:00 a.m. Sneak under the victim's bed. Once it goes off, he/she won't be able to find it will drive them nuts.

6.Switch the "Pull" and "Push" signs on a set of doors. Watch as people get confused trying to open the doors. (Don't do this on fire escapes)

7.You will need a funnel, a coin, a couple of friends and, of course, a victim! Start playing the 'funnel game' infront of your victim. A game of skill that involves putting the funnel down the front of your pants and balancing the coin on your nose with your head tilted back. Tip your head forward to let the coin drop into the funnel. When you have the victim begging to do this put the funnel in his pants and get him to put his head back so you can balance the coin on his nose. As this is happening pour a large drink into the funnel!

8. Stick a post-it note under your friend's mouse so that the paper leaf covers the mouse ball - the mouse will no longer work! Align so that the sticky part of the note doesn't touch the ball. Costs next to nothing to do, and doesn't cause any damage. NURSES, I recommend doing this to the Doctor's computer. I have. It's funny.

9. Grab a bottle of liquid soap and head toward the "victims" bedroom. Squirt some of the soap onto your hand and rub all over the doorknob of his/her room. Run away before he or she sees you in the process of doing this prank.

10. Glue eggs to the carton and beg for eggs in the morning. When the victim gets them the eggs break!

11. When your victims asleep sneak into their room and draw eyebrows and a moustache on their face, make sure to be their when they look in the mirror.

12. Put some water in a cereal bowl, and place it in the freezer so that the water freezes. Offer to make your sister/brother cereal in the morning. Make sure you use that same bowl. Put their favorite cereal over the top of the ice, and serve.

13. Take a rubber band and slip it over the lever on the spray handle so that when someone turns the sink on, it will spray him or her in the face. This is an easy way to pull a great prank! There is also a way to rig saline filled syringes (no needles please) with rubber bands attached to lockers handles so when the door is opened the syringe delivers a face full of saline, just in case any of you health care "professionals" do get bored.

14. Tell your kids that you just got the test scores from the proficiency tests and then go down stairs and say to your kids your going to go and make copies and then come running / walking and make your face look like you just saw a ghost and say to your kids that whatever your principals name is just spilled coffee on the proficiency tests and they will have to take it again. This could also work with students, if you happen to teach.

Going Blind

I’m going blind.
Not the “my eyes are bad and getting worse with age and I’m blind” variety or the “I woke up and had difficulty seeing so I’m being dramatic” variety.
It’s the “I knew I could lose my site as a result of graft vs. host disease post transplant” feeling.
It is terrifying.
I think it is made worse that I knowingly, willingly, and readily went to transplant with the knowledge it was a side effect.
I said okay to losing my eyesight to stay alive.
I said okay to any state between health and death actually, just some side effects are more common than others.
I’m sad. I want to feel bad for myself. I do feel bad for myself, but I won’t give myself permission. I knew what I was doing to myself.
I woke up one Monday, weeks ago, feeling sick and eyes hurting.
I called my providers and said I had conjunctivitis.
I really wanted to have conjunctivitis.
I do have conjunctivitis.
It just happens to be because of graft vs. host disease.
Now that I’m recovering from the para influenza and the subsequent bacterial infection, I am not feeling better.
I’m feeling worse.
Now I know which symptoms are from my virus and bacterial infection and which ones are from my chronic graft vs. host disease.
This sucks.
These effects could be lifelong.
My eyes are definitely the primary site of attack.
By attack I mean my new immune system does not recognize my eyes. The immune system, who I have named Simone, is trying to do its job and get rid of invaders like foreign materials, bacteria, viruses, and immature, rapidly replicating cells.
Simone is working hard.
She just doesn’t recognize my eyes or the lining in my mouth or my skin so she’s trying to kill them off.
On days she misbehaves, I call her Mona. Actually, I call us Mona.
I know I like this girl.
But Simone needs to love me on her bad days and stop being a mona.
I thought I would research what was available as far as treatment options for the eye pain since drops all the time isn’t helping the blurred vision in my right eye.
Then I wished I’d never looked.
The answer: steroids, maybe, could help.
Let me warn you, don’t look if you don’t want the answer.
Ignorance is bliss.
Now, I didn’t think it was possible, but I’m more depressed.
This is almost as bad as when I read Dr. Alyea’s research and realized he had specifically studied patients who had received allogenic transplants with C locus mismatches and determined a 30% survival rate.
Sloan and Kettering said I had a 50% chance with the mismatch.
Damn it all.
And since there is nothing that can be done to go back in time, I just should stop reading the research.
I can’t. I keep clinging to the hope that the truth will set me free. I intellectualize as my primary defense mechanism.
I do have an undying faith that the cure exists. I just need to find it.
I keep looking and finding bad news!
It’s out there, and I’m going to find it. First, I’m going to call Dr. A to make sure I can see it.
Please, take a breath and breathe a sigh of relief, I’m getting an appointment at Mass. Eye and Ear with some superstar who has seen this before.
I am getting the best care available.
I just hope it’s enough.

Monday, March 30, 2009

Work Hard. Be Nice. Lessons from KIPP

I know about KIPP only because I read about the program in Malcolm Gladwell's Outliers.

Outliers, by definition, are data points within a study that do not trend with the norm. These points are outside the average realm of normalcy within the context, sometimes wwaayyyy outside.

Maybe I am an outlier, because I am pretty confidant I am not normal. I'm pretty sure some health care professionals would weigh in and confirm this.

Malcolm Gladwell attempts to explain Outliers, geniuses, successful businessmen, professional athletes, etc. through anthropological research and social structures.

I liked it.

I thought of it like a "how-to guide" to creating a genius, or at the very least, providing the best advantage within your social circumstances.

What I liked most: Xander is in good standing to be an outlier. He is certainly advantaged despite our illnesses.

Gladwell refers to KIPP as a program that addresses specific social disadvantages met by poor children. He also sites specific research testifying to the theory behind this program.

Now, I read that there is a whole book about the program.

I think the following article is worth reading.

The Educational Experiment We Really Need
What the Knowledge Is Power Program has yet to prove.

By Sara MosleUpdated Monday, March 23, 2009, at 6:58 AM ET
In his new book, Work Hard. Be Nice., Jay Mathews claims that the Knowledge Is Power Program is the "best" program serving severely disadvantaged, minority-group students in America today. Let me begin—before I'm denounced as a traitor to the cause of educational reform—by saying that I'm inclined to agree. The improbable story of how KIPP was founded in 1994 by David Levin and Michael Feinberg, two young Teach for America alumni in Houston, is thrilling and worthy reading. KIPP's mission has been akin to putting the first man on the moon: an all-out education race, requiring extraordinary, round-the-clock dedication from parents, students, and teachers alike. But the program is not the proven, replicable model for eliminating the achievement gap in the inner city that Mathews imagines, and this distinction is crucial. KIPP may be something more important: a unique chance to test, once and for all, the alluring but suspect notion that there actually is an educational panacea for social inequality. As of yet, the evidence for such a thing doesn't exist.
There have always been model school programs that work. There have even been some that have been successfully replicated in different parts of the country. But no program has shown it can work for all, or even most, disadvantaged children within a single city or neighborhood. Instead, as critics point out, such model programs tend to skim off those kids who are already better positioned (thanks to better home environments, greater natural gifts, savvier or better-educated parents, etc.) to escape the ghetto. Meanwhile, regular public schools are left with a more distilled population of struggling students. Similarly, model programs tend to attract young, talented, and adventurous teachers, who are willing or able to work long hours for low pay. (Model schools also tend to attract the most philanthropic dollars, which effectively boost per-pupil expenditures, even as such programs can still brag they use no more tax dollars than traditional public schools.) Indeed, Mathews likens KIPP to a cult "without the dues or the weird robes." But by definition, a cult is a fringe movement. To date, no one—including such mighty players as the Gates Foundation—has figured out how to take an educational cult and make it the predominant religion within any urban system.
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Mathews insists that KIPP has solved this riddle. It's true that perhaps no other model program has risen so far so fast, with such consistently strong test scores. KIPP now has 66 academies in 19 states. Still, 66 academies amount to just three schools, on average, per state. Houston has far and away the highest concentration with, currently, seven middle schools, three elementary schools, and one high school. But this is in a school system with 200,000 students, nearly 80 percent of whom qualify for reduced or free lunches. At the moment, like every other model program before it, KIPP serves only a tiny fraction of disadvantaged students within any given district. And as education researcher Richard Rothstein has rightly noted, comparing students from different schools, even within the same disadvantaged neighborhoods, is very difficult to do in a rigorous, scientific way. Just because KIPP uses a lottery for admissions, for example, does not tell us anything about the self-selecting nature of the pool from which this lottery is drawn. (Rothstein's own research—here and here—has shown that KIPP students come from families that are better off, or better educated, than their regular public school or special-education counterparts.)
What is more, KIPP's approach is implicitly, but obviously, not designed to suit all students—or, for that matter, all parents or teachers. For decades, educators argued that disadvantaged children could succeed if only they received the same education as more advantaged, middle-class students. Many, if not most, of the nation's best public and private schools are decidedly progressive, with less emphasis on test scores and more on critical thinking skills, with rich arts, music, sports, and other extracurricular programs. Why shouldn't poorer children enjoy the same?
But KIPP is not the same. The program has usefully changed the debate by acknowledging the obvious: Kids who grow up poor, with no books or with functionally illiterate parents, in crime-ridden neighborhoods, with destructive peer influences and without access to basic medical care (such as glasses to help them read), need something significantly more than—and different from—kids who grow up with every economic and educational advantage on which to build. For one, the academic program at KIPP is relentless in its back-to-basics focus: a boot camp that runs nearly 10 hours a day, from 7:30 a.m. until 5 p.m., not including transportation and homework, and half a day every other Saturday.

There is a lot of rote learning and test prep, born of the program's emphasis on demonstrable results. Enrichment programs exist (one Bronx school has a remarkable orchestra) but are necessarily limited, because precious time must also be devoted to teaching social skills that middle-class students take for granted—for example, how to follow a speaker with one's eyes and nod as one takes in information. In addition, KIPP includes an extended summer school. (Research has shown that middle-class students consolidate and even improve on their educational gains during the summer months, while underprivileged students slip backward, negating their progress during the academic year.)
As a result, KIPP teachers typically work 65-hour weeks and a longer school year. Recognizing that students need more out-of-school aid to supplement their educations, the program also requires its staff to be available to students by phone after hours for homework help and moral support. For this overtime (which represents 60 percent more time in the classroom alone, on average, than in regular public schools), teachers receive just 20 percent more pay. Unsurprisingly, turnover is high. The program has relied heavily on the ever-renewing supply of very young (and thus less expensive) Teach for America alums, whose numbers, while growing, are decidedly finite. Indeed, it's unclear whether KIPP would exist were it not for TFA (and its own philanthropic investment in recruitment and training, which has not come cheap).
For example, many of KIPP's now-lauded approaches were first developed not by Levin and Feinberg but by a career public-school teacher in Houston whose methods they admired back when they were TFAers. Levin and Feinberg tried to recruit their mentor to help launch KIPP, but as a middle-aged single mother, she felt she couldn't afford to join their revolution. If KIPP's success is ever to become widespread, it's going to have to find more room for such everyday heroes, who are not less talented than eager, young TFAers but who do have lives, families, and financial needs outside their jobs.
Parents or guardians, too, must be hardy souls at KIPP. They have to sign a contract saying they agree to KIPP's exacting schedule, which serves, intentionally or not, to eliminate kids from less involved or determined families. While KIPP does have outreach efforts to broaden its applicant pool, only the most determined parents are likely to respond to such overtures and sign KIPP's demanding contract. This dedication suggests a higher value on education within these families, and thus kids better able or willing to learn. And the weakest students, not surprisingly, get disproportionately winnowed. In KIPP's schools in the San Francisco Bay Area, for example, the worst-performing kids have dropped out (or been expelled) in greater numbers in the higher grades; the result has been to inflate the schools' grade-to-grade improvement.
Such a regimen isn't for everyone, but KIPP has shown that with the right underprivileged population, it can make a significant, consistent difference—which is a lot more than most charter programs can say. (A 2006 report by the Education Department—i.e., under a Republican administration—revealed that traditional public schools significantly outperform charter programs in reading and math.) Far from finding the boot-camp atmosphere dispiriting, kids—at least, those who stay—clearly adore KIPP. This may be the program's singular accomplishment: It's made "back to basics" fun. However, even Mathews, the KIPP champion, describes an approach to discipline that sometimes seems unduly harsh; in less expert hands, such an approach could easily deteriorate into something more disturbing, and if implemented on a wide scale, might well turn off as many students and parents as it helps. Finally, even with such gargantuan efforts, KIPP helps to close, but does not remotely eliminate, the achievement gap in the inner city. It is not the answer to urban ills that Mathews proposes.
But because KIPP has done so much better than so many other charter programs, it has earned the right to shoot not only for the moon but beyond. Given this, what mystifies me about KIPP is that it has scattered its resources across the country—opening just a few schools in any one state—instead of trying to concentrate its resources more fully in one community.
No doubt the strategy partly reflects practical hurdles. States may limit the number of charter programs (although this may change if President Obama gets his way with his new education plan). In addition, there may be union or administrative opposition, although until recently, KIPP and the teachers unions had peacefully coexisted. (Now, a dispute between one KIPP school in Brooklyn and New York's United Federation of Teachers threatens this détente.)
But since the biggest debate about KIPP, on both the ideological left and right, is whether or not its methods can work for all disadvantaged children (instead of just a handful of self-selecting families), why wouldn't it—and its financial, ideological, and media backers—have a strong interest in answering this question once and for all by taking on an entire urban area or even, for that matter, a single neighborhood as, say, Geoffrey Canada has tried to do in Harlem with his Harlem's Children's Zone?
There's something perversely evasive about KIPP's opening up just one school in Dallas, one school in Albany, N.Y., one school in Oakland, Calif., one school in Charlotte, N.C., one school in Nashville, Tenn., and so on—as if the program recognizes that its best chance at success is to be the exception rather than the rule in any city where it operates. Perhaps this approach made sense in the program's early years, when it needed to build credibility and attract financing. But now it has done both. Until KIPP tries to succeed within an entire, single community, it is, for all its remarkable rise and deserved praise, just another model program that has yet to prove it can succeed with all—or even most—disadvantaged children.

Sunday, March 29, 2009

Happy Mental Health Day!!!

Here's a good joke & a picture of my hair in the morning to start your week off right.

The story of Ralphand Edna...
Just because someone doesn't love you the way you want them to, doesn'tmean they don't love you with all they have. Ralph and Edna were bothpatients in a mental hospital. One day while they were walking past thehospital swimming pool. Ralph suddenly jumped into the deep end.
He sank to the bottom of the pool and stayed there.
Edna promptly jumped in to save him. She swam to the bottom andpulled him out. When the Head Nurse Director became aware of Edna'sheroic act she immediately ordered her t o be discharged from the hospital, asshe now considered her to be mentally stable.
When she went to tell Edna the news she said, 'Edna, I have good newsand bad news. The good news is you're being discharged, since you wereable to rationally respond to a crisis by jumping in and saving the life of theperson you love. I have concluded that your act displays soundmindedness.
The bad news is, Ralph hung himself in the bathroom with his bathrobebelt right after you saved him. I am so sorry, but he's dead.'
Edna replied, 'He didn't hang himself, I put him there to dry. How soon can I go home?'
Happy Mental Health Day!

Congress is working RIGHT NOW to pass the President's budget, which includes funds for important things like education, health care reform, and energy independence. This is an historic commitment and a vital first step towards getting our country back on the right track. Among other things, President Obama's 2010 budget calls for:

Cutting the deficit in half over the next five years.
Equipping thousands of schools, community colleges, and universities with 21st century classrooms, labs, and libraries.
Eliminating billions in Pentagon waste, which includes funds used for outdated Cold War-style weapons.
Eliminating incentives for companies that ship jobs overseas and giving a generous package of tax cuts to 95% of working families.

How can you help ensure that these investments are made? Here are a couple of ideas:
Write a Letter to the Editor of your local newspaper in support of the budget resolution (we provide sample talking points!)

Call Senators Gregg and Shaheen using our easy-to-use click to call technology and urge them to support the budget resolution when it comes to the Senate floor next week

or Contact Gregg and Shaheen using:

It is imperative that our Senators hear NH voices loud and clear. Please take a moment and take action.
Thank you for all that you do to invest in America's future!

Heirarchy of Needs

Everywhere I look this week the economic recession appears to be taking a back seat to the new hot topic, health care.
Articles regarding not only the uninsured, but the underinsured, are cropping up on the cover of Time, local papers throughout the U.S. as state budgets are announced and on MSN’s main home page.
The healthy state of America’s economy had apparently been camouflaging a public health problem for the first several years of the millennium.
Now, with the housing bubble burst, the fall of investment banks, and a national recession rivaling the depression, the sugar coating is gone from our society. Our rose colored glasses have been traded in for some clearer bi-focals.
The problems our country has been facing for years that were blanketed by the overall wealth of the United States can no longer be concealed.
The cost of health care, and the entire health care system, are among these problems.
Many of us are cutting our budgets back to “need only” buying. In our personal budgets, we are forced to determine what is a “want” and what is a “need” and buy to survive.
This idea is economics 101. I have all ready taught my 6 year old the difference between a need and a want. Clothing, food, and shelter come first. They are integral to survival.
Taking care of yourself will allow you to survive.
Along these lines, access to health care, doctor’s appointments, and medications are also needed to survive.
Maslow has a hierarchy of needs, which is illustrated through the use of a pyramid. At the base of the pyramid, the foundation, is what every individual needs to physiologically function: breathing, food, water, excretion homeostasis. The Second level is safety: security of body, of employment, of resources, of family, and of health.
Without obtaining the necessities within each level, a person cannot improve themselves to obtain a higher, more personally developed, and dare I say better, level.
A person that can not physiologically function can not seek safety. A person that is not physiologically functioning and safe can not accomplish love and belonging and so on and so forth until reaching the top of the pyramid, self actualization.
At the point of self actualization, the tip of the pyramid, is where problem solving occurs.
Within the second tier, in the realm of safety, is employment and health.
A massive change in feelings of safety in individual citizens will lead to their failures in other areas of the hierarchy.
Without the safety net of employment and health care, love and belonging and self esteem will be adversely effected.
Statistics show that the third most likely person to perpetrate domestic violence after drug addicts and alcoholics are the unemployed. Unemployment is demasculating and during periods of recession, reports of spousal abuse rise.
Unemployment rates positively correlate with the rates of domestic violence. In English, If unemployment rates go up so does the incidence of domestic violence.
This is just one example of how the recession is affecting our communities.
The possible effect of inaffordable, unaccessible health care is scarier.
The health insurance industry is constructed in a manner very similar to the structure of investment banks specializing in subprime mortgages.
Companies that sold subprime mortgages sold to people who would not qualify under Savings Bank’s standards. Experts and specialists sold to mortgages to people who otherwise could not afford what they were buying, were not aware of other options and/or the possible consequences of entering into the contractual agreement.
As we’ve seen, the consequences of these banks providing loans to people that did not meet lending standards were diffuse defaults on loans which had a resounding tidal wave effect that flattened the largest banks perpertrating this practice in its wake.
The government was forced to take over these companies.
These companies never would have been able to sell their product and begin this domino effect had they not used their intellect to convince their consumers what they were selling was safe and necessary.
The sale of Health insurance policies function in a similar manner. The consumer is assured they have the necessary coverage for their safety.
However, when a problem arises, the coverage often proves inadequate. It is difficult to simultaneously conquer the obstacle that requires the insurance money, whether it be the reconstruction of a house that was destroyed by flood or the health diagnosis of cancer, and fight the insurance company, which is the one place that can give you safety.
To publicly stand against an insurance company is to risk they will provide nothing towards the home you’ve lost or to the health care costs you need for survival.
The insurance company wins by default.
The insurance company holds the possibility of safety in their hands. If they are challenged, you risk losing something you need to survive.
This is the moral equivalent of holding my bone marrow hostage for my compliance. If I do not seek justice, then I will continue to receive my medical care. If I remain silent, the majority of my costs will be covered.
If I decide to take a stand and demand in a very public manner that the insurance company provides the safety net they stated to have sold me, I risk losing everything. I risk my stem cell transplant.
I don’t see how this is legal in America.
The policy is misrepresented at sale. This has happened when homeowners fought for coverage in the wake of Hurricane Katrina, see
More recently, March 16, 2009’s Time cover is dedicated to this scary reality. The article “So You Think You’re Insured” outlines how one man who had been dutifully paying for health insurance in 6 months increments was abandoned when his kidneys failed suddenly due to a blood test that showed kidney abnormalities during a previous 6 month period, placing him in the dreaded “preexisting condition” category, even though he was not diagnosed.
Most people, hard working, educated, employed, with 6 months of emergency savings are not safe. We are all one illness away from financial ruin.
It is estimated 50% of bankruptcies are due to illness. Please see Also see
These articles are from 2005. The current recession is picking the scab of a deep festering wound. Further cuts to the needs of Americans will cause this scab to fall exposing a deep wound.
There is hope. The problems within health care are now making headlines. The first step in any twelve step program for recovery is admitting there is a problem. I think most of us have admitted to the first step: America, we have a problem. Now we can work towards the solution.

Saturday, March 28, 2009

Rage Against The Disease

Walking up after a night of ambien & Benadryl induced sleep to the feeling of dry, chapped lips, plaque covered teeth, diffuse muscle aches, and gritty eyes glued shut by mucus overflow from my sinus always makes me want to stay asleep. . . . . . indefinitely.
At the very least, I want to reach for my pain control and stay in bed, refusing to move, possibly forever.
Rolling out of bed, I know everything is going to hurt.
Just waking up, is an exhausting chore. My eyes burn. My mouth feels foul. My muscles are screaming. My lungs burn from breathing. My joints ache.
I’m in pain, and I’ve just barely became awake.
This is not the way anybody should start their day.
My entire body is demanding, through all my aches and pains, that I just stay in bed. My body is hollering to roll over and give in.
Stay in bed, one more day. Don’t move. If you just stay still, maybe you’ll feel better.
I want so badly to listen to my body.
Most mornings, I wake up to this struggle.
My body tells me to sleep. It tells me to lie down, don’t move.
I get up anyway.
I roll over, slowly, put one for on the floor and then the other to feel the shock of pain when my soles hit the floor and radiates up my legs.
My joints creek like I’m bending them within an inch of their life.
My muscles threaten to stop working all together and drop me mid-movement.
This is my daily mind-body battle.
I know, within myself, with all the strength and determination of my personality, that the signals my body is sending me, the signals to roll over to sleep, to refuse to move, to stay in bed indefinitely, is NOT what is best for my body.
It is an exhausting internal struggle for health.
My body, and all my nervous system signals, are screaming, hollering, rioting, telling me to stay stll, stay in bed, the pain, the weakness, the suffering is so much.
My mind, my personality, my inner essence that is determined to heal, knows better.
I always get up.
I feel like “Old Man Winter” in the Chris Cringle movie. I just need to put one foot in front of the other.
But damn, every single morning?
I’m pretty sure this is what people are referring to when they tell cancer patients to “stay strong” and “keep fighting.”
I’m fighting the urges of my body.
I’m fighting the signals that tell me my mouth hurts too badly and my sores are too painful to eat so I keep eating and drinking.
I’m fighting to keep my thoughts stronger than my body’s pathology.
I’m fighting just to roll over, stand up, and put one foot in front of the other to walk, because I know if I don’t, I may lose the ability all together. The process may be too painful later.
I need to stand up and keep moving despite every internal signal telling me otherwise.
I always do.
That’s why I survive so long.
I get up, roll out of bed. I set one goal for the day. One action I want to accomplish. A goal that is adjusted in accordance with current circumstances and health status.
I want to sit unassisted.
I want to walk to the kitchen.
I want to dress independently.
I remember that little accomplishments are great in my circumstances.
I don’t think about the ten steps back I took in recovering to get where I am.
I readjust, roll with the punches. I accept my immediate status.
I do not, can not, waste time thinking of what could have been.
I think of what will be, and the steps I need to get there.
Then, without hesitation, I do them.
Again and again. Over and Over. For years now, this has kept me alive.
It has kept me functioning better than most do after similar treatment.
I roll out of bed every day. I shower. I change my clothes.
If this is all I do for the day, I have still done something.
I’m still refreshed. I’m still capable.
I still have hope.

Friday, March 27, 2009

Help Jasmina: Become a Donor

Still Sick

I saw the Doctor and Practitioner today.
According to them, I’m still sick.
I’m going to be sick, probably for a while.
Some of my symptoms are chronic, meaning they could last forever, specifically the inflammation from my graft vs. host disease.
I’m getting an appointment scheduled with an optometrist at Mass. Ear and Eye for the inflammation in my eyes causing grittiness, pain, and possibly visual impairments.
I’m told he’s really good.
I’ll take it. Everybody I have been sent to has been good so far.
I mean really good, rock star, celebrity, top of their game style.
I’m in good, capable hands.
I’m getting my liver checked next week, sometime, at Dartmouth.
My liver enzymes today were. . . . . . bad.
A test for liver enzymes shows a level of breakdown happening within the organ, or simply put, failure. The enzymes include aspartate aminotransferase (AST or SGOT) and alanine aminotransferase (ALT or SGPT). These enzymes are normally contained within liver cells. If the liver is injured, the liver cells spill the enzymes into blood, raising the enzyme levels in the blood and signaling the liver damage.
If any of you are freaking out and are needing specific numbers, here it is: My AST is 98 (9-30 is normal) and my ALT 94 (Good range 7-52).
My alkaline phosphatase is up.
This is a blood test that measures the amount of the enzyme ALP (alkaline phosphatase).
When this is present in large amounts, it may signify bone/liver disease or a tumor.
Damaged or diseased tissue releases enzymes into the blood, so serum ALP measurements can be abnormal in many conditions, including bone disease and liver disease. Serum ALP is also increased in some normal circumstances (for example, during normal bone growth) or in response to a variety of drugs.
Okay. Screech. Halt. Rewind.
I said it. You read it. Go ahead and reread.
My alk phos is 307.
That could mean a tumor.
It could also be a side effect of my medications or the transplant itself.
What I need to immediately stop doing is insulting my liver.
I’m not talking about drinking or forcing toxins into my body.
I’m saying I need to stop forcing it out. No more osteopathic/acupressure stimulation with acupuncture every other week directly targeting my liver. I’ll still get the services, but be more gentle.
Definitely no more homeopathic German Bio Tinctures that none of us really understand EXACTLY what it is doing to my body, especially ones that stimulate the lymphatic system or contain low dose live viruses.
No need to freak out, I never tried the live viruses. I get the rationale. It still scares me.
The rationale is similar to vaccinations. You reintroduce viruses slowly into your system to gain immunity without suffering the effects of exposure. I would have taken doses that could comfortably be prescribed to a 6 month old.
When I first tried this, I was given adult doses, but things have changed.
I added these medications slowly, week by week, to know if something caused a reaction.
I can’t tell you if what I took catapulted my disease throughout my brand, shiny, new immune system, but if it did, I wouldn’t be any more worried than I would be with one tumor.
My cancer goes away, easily.
It just always comes back.
It’s a ferocious, persistent little bugger, just like its host.
Aunt Pauline took me to the health food store after our appointment. We had a bonding day. Pauline always has been a Grade A caretaker.
The idea behind the health food : I don’t want my body to work any harder processing what I eat than it has to. Every little piece of energy that is taken away from fighting my disease to process something difficult, like grease, or molecularly altered to a naturally unrecognizable state, such as trans-fats, is lost ground in my fight against cancer.
However, I need to pack in food.
I am not trying to be the next America’s Top Model. I need to weigh in at more than 106 lbs. That’s a loss of 12lbs since January. It’s a loss of three lbs. since last Tues.
However, I did measure in at 166cm at the hospital, maybe I can sneak into model range height somehow. I could take up yoga and stretch myself.
I’d be okay being a poster child for cancer.
So at least, I got a lesson in shopping for natural foods. I’ve never been to a natural food store or co-op outside our local Granny’s Garden, which is great.
I was a little overwhelmed, almost shocked into buying nothing.
It was like the first time I went into a Bodega in the Bronx.
It was a culture shock. There were all these foods I didn’t recognize. I wouldn’t know what to do with them.
THEN I got asked if I had my mask on because I had to protect against allergies like it was COMPLETELY NORMAL. It was a signal saying “it’s-okay-to-be-an-allerginphobe-in-here.”
Seriously, air borne allergies to things like latex and peanuts are very scary. Those allergies kill people.
I would be grocery shopping with my mask on if I had to be scared of a peanut lurking around every corner.
I think I fit in there.
So, in summary of my trip, I am sick. I’m going to be watched closely. I’m going to watch myself closely. I’m going to finish the cephalosporin I’m on for my pneumonia.
I am NEVER EVER going to EVER miss a dose of my Bactrim, which I haven’t, but I gave my word specifically to love and cherish this medication, which prevents against PCP pneumonia. I can use my albuterol rescue inhaler.
I’m going to put drops in my eyes 4 times a day, minimum.
I am NOT going to beat on my liver with hands, needles, or weird German medications, even though I think it’s one of my toughest organs and I know if I ever lost it, I could have a piece of Heather’s.
I’m going to relax and eat and drink.
And I’m going to get better.

Wednesday, March 25, 2009

Welcome Home, Hillary, You have Bills

Welcome Home, Hillary, you have BILLS!
I get home from the hospital, check the mail, and SURPRISE, I see a letter from my long term disability company.
Apparently, there is a misunderstanding as to what the word PERMANENT means, as in, I am PERMANENTLY disabled.
I need to provide evidence again that I am still recovering from the same stem cell transplant I was in October.
I also need to give them a waiver to speak with social security regarding my “reward” (that’s what they call the money I receive monthly).
Heaven forbid I be living the highlife on social security and disability while I suffer.
Heaven forbid I go an entire 6 months without submitting proof that my permanent disability is still permanent, and I have not, somehow, miraculously, recovered faster than any other patient in history.
Maybe, just maybe, those “lifelong” side effects I signed off on somehow did not affect me.
Possibly, I am that person, and the company needs to know, so it can cut off my income immediately.
Since, I’m not, they’re just going to keep making me jump through hoops to stay in their good graces and keep my livelihood coming.
Do you want to know what happens if I don’t?
I made the error of failing to submit my social security letter to the disability company during my chemotherapy in 2006.
I started receiving social security in Oct. 2006 during the period I was prepping for my first transplant.
Not knowing the nasty nature of my cancer, I would undergo a chemotherapy regimen, take a couple weeks off to recover, be admitted to the hospital for my procedure, only to discover WOW, my cancer had come back.
I had to start at square one, with a new chemotherapy regimen, a new schedule, and more side effects to achieve remission for transplant.
Silly me, I missed the small print telling me to keep the disability company in the financial loop.
Wasn’t I surprised when I got a “Dear Hillary” letter from the company telling me to IMMEDIATELY PAY BACK their over payment of $7000 or never receive a check again until the balance was paid.
Yes, this is the threat if I don’t meet their demands.
They’ll stop paying me, no ifs, ands, or buts, no recourse, no appeal process.
Do not pass go, you are now more broke than before.
And if for some reason there is an error in accounting, if I make a misstep for some crazy reason like I’m in the hospital receiving treatment, I WILL be paying them back.
It doesn’t matter if my family starves. It doesn’t matter if I lose my house. It doesn’t matter if I can no longer pay my deductibles.
My bills can still go to collections. I can still have agents waking me up at 7 am to collect.
Then it would be, welcome home, you can’t get rest, you have bills to pay.
The disability company needs to make a profit, and by being sick, I’m seriously cutting into those margins.
It appears, since I legitimately qualify for these benefits, the only possibility to remove me from their service is to make meeting my end of the agreement impossible.
I get sent paperwork to fill out. I receive phone calls requesting records from EVERY physician that treats me. I sign waivers for the company to access private records. If a miss a detail, I’m rejected.
I work as a secretary/middleman even though I get benefits because I am UNABLE to do these duties.
I am so lucky just to have insurance. However, I wouldn’t be able to keep it if I didn’t have assistance.
I don’t understand how companies that insure me because I am too sick and disabled to do these duties can penalize me, stopping services, because I am not well enough to submit their paperwork.
Just in case it was hard to wrap your mind around that (I know it was for me), let’s try to get this straight: I’m repeatedly required to provide evidence that I’m incapable of doing the work it takes to provide the evidence
Funny, isn’t it?
But not funny “ha ha.” It’s funny weird.

Did I really say that?

There comes a point after every acute illness when I start to recover that I begin to decompress and process what happened.
Usually, my process goes a little like this:
“Oh my goodness, did I really. . . . . .
Try to give Dr. Meehan a high five because I decided he was going to fix me and wanted to celebrate in advance?
Lift up my shirt coming scarily close to “flashing” my providers because I decided EVERYBODY had to know what a GVHD rash looked like?
Laugh at my doctor for putting the pulse oximeter on my finger upside down? (FYI, there isn’t really an “upside down” it works both ways, it just takes longer)
Refuse to take off my mask because in my feverishness I determined I was contagious, all the health care workers around me could get it, and I could solely infect thousands causing an illness epidemic?
Then, I have to take a second, take a breath, and realize, YES, I did do all these things, and probably many more I don’t even remember.
Sometimes, I think, that every person who has ever met me has at some point heard me make a statement and thought, “WHOA, did she really just say that?”
The answer: Yes, I did.
This only gets worse when I’m sick.
Sickness, as a general rule, intensifies the worst traits within an individual.
People become exceedingly needy if they were needy in relationships before. They become more depressed if they were ever previously disposed to depression.
Traits get exploited in illness.
One of my traits is that I can be honest to a fault.
Then, I think it’s funny. I’m sick. I’m talking with no edit button, and it’s all incoherent fun and jokes.
Illness, fever, narcotics, alcohol, desperation to be better- all these add to a lack of judgment.
The safeguard, the line that won’t be socially crossed when a person is functioning at their best, does not exist when I get sick.
It ceases to exist for many. It takes all the energy possible to SURVIVE, nobody cares at this point about social savior faire.
Fortunately, I eventually recover.
And with this recovery, I start to come around, I come to, and I think “Dammit, I did it again.”
I should really get around to getting that disclaimer tattoed on my chest saying, “Statements made in sickness are not as truthful as they seem.”
It’s just me exercising poor judgment. It’s me losing the internal edit button I generally have a poor grasp on anyway.
I liken it to a person having too much to drink, losing a good handle on their judgment, only to wake up, partially sober, and think “Did I really. . . . . get up on the wedding party’s table and do the Macarena? ……. Try to tongue kiss my friend’s step mother?” or “I can’t believe I. . . . .threw up in the elevator? Tried to tackle the 7 foot, 400 lb. body guard?”
Maybe, looking back, it was a bad decision, but at the time it seemed like a good idea, and as long as nobody gets hurt, it makes a good story.
Cheers to many more recoveries where I wake up laughing at myself.

Tuesday, March 24, 2009


How quickly my excitement to be out of the hospital changes back to irritation.
What a couple hours ago was a major accomplishment of being discharged from the hospital is now just another action, a completely inconsequential action.
It turns out, AGAIN, just because I was deemed healthy enough to leave the hospital I am NOT miraculously cured.
Apparently, just because I am no longer under doctors’ orders and nurses’ supervision it does not mean that they waived their magic wand and healed me back to pre-transplant, or even pre-viral, health.
You think I would know that discharge didn’t mean all was well in Hillville.
You would think, at some point, I would leave behind the naïve hope that since all sorts of people with all sorts of years of experience and education had banded together to say that I was capable enough of caring for myself at home that, not only could I care for myself, but I would FEEL GOOD doing it.
I haven’t lost that idea yet.
So clearly, I’ve been a little frustrated since I got home.
A lot of this is my frustration talking.
The ride home was tiring.
I don’t know if healthy people can understand this, but riding in a car can be exhausting.
THEN getting home and realizing I can NOT just pick up the clutter, finish cleaning the dishes, feed the animals, and still have energy to take care of X adds to the frustration.
I go from a little irritated, then to frustrated, then to downright angry.
Where is this anger supposed to go?
I’ve experienced this feeling before. . . . . A LOT.
It’s the feeling that Hooray, I am getting better! I have concrete evidence that I’m healing! But, ugh, I’m still sick.
Maybe you can imagine the kind of nasty funk of a mood this puts me in.
I can imagine others in similar situations with roller coasters of health and illness, admissions and discharges feel the same way.
It can be downright angering.
And how can you complain?
I’m getting better. I feel good. I’m improving. The end is in sight.
I’m supposed to feel good and happy. I’m supposed to feel like I’ve accomplished something, but I don’t.
Then I just get irritable.
To all those out there suffering with diseases, I hear this is normal.
That is one thing to feel good about. I’m normal.
But what I want to hear is that it’s okay to still feel sick, to take more time to heal, and to heal individually, the way I need to heal for my body, not the way that somebody else did because of the way their body responded.
Thank goodness for this trend of personalizing care.
Maybe, hopefully, sometime soon, we’ll understand that recovery is also incredibly individualized and give each other, and in my case, myself, permission to take the time to heal.
I am. I’m taking sometime to feel good about getting better. I’m taking sometime to be frustrated I’m not healthy yet.
X just got home, ran to the door, straight to the fridge, and into my room with a drink to “make me all better.” Now, I’m taking sometime to know everything will be allright.

Monday, March 23, 2009

Diagnosis: Television Exposure

I was beginning to worry I may die.
I’m feeling confident that I will survive this flu.
I will survive the pneumonia & nasty bacterial infection that made me so miserable this weekend.
Praise Jesus for modern medical miracles.
As I was recovering, I was sure I may die due to overexposure to daytime television.
Emails, jokes, & funny forwards may have saved me by keeping me away from the talk shows.
Thankfully, due to divine intervention, also known as Dr.’s Meehan, Cocav, and Meir, I don’t have to face my fear of brain death by smut television.


I’m still in the hospital. I’m still laying in the same bed I plopped into on Sat.
Now, thankfully, I can function at some capacity.
I have the energy to turn on my computer.
I have the mental capacity to write and know what I am saying makes sense!
This is an improvement.
This is what a couple days of IV fluids and antibiotics will get you.
My fevers have subsided. I am still coughing. My lungs are still rattling. I still have a head full of snot.
But this is an improvement. Despite all these problems, I haven’ had a fever in a while and I can think almost coherently. Almost.
Maybe, I’ll be able to go home today.
I saw the resident all ready. He said he’d consider my discharge.
I also know he has to consider my discharge alongside the fellow and attending.
Good news is, two of the residents I remember from years ago as an inpatient are now FELLOWS in hematology.
Yes, Hi Cocav & Martin, both treated me in their residency and are now specializing in hematology.
How could they not? Heme gives access to such amazing patients.
Okay, okay, it is also a burgeoning field with the possibility for revolutionary discoveries.
Discharged or not, no matter where I am, I see lots of rest and more sleep in my crystal ball.
This sickness took a lot of energy to fight. It will take some time to recover.
A STRONG MOTIVATOR to recover though this is the fact MY PICTURE is posted at the nurse’s station!
Yes, my picture, a picture of me, speaking to the legislature, is hanging on the nurse’s bulletin board!
The nurses here are some of the best I’ve encountered. I’ve thought of them often since my treatments have taken me elsewhere.
They were like family for a long time. I did spend the better portion of a year here, in their care.
And I see they remember me! They remember me and their proud.
Health care will become a huge issue in the coming years.
As our economy declines, as more people become unemployed, as fewer jobs offer health care packages and people begin to go without insurance to cut costs, social problems and public health issues that were hidden by our hyper-inflated economy and our previous years of wealth will rise to the surface.
Here is how to help.
Katherine KlemGrassroots Advocacy CoordinatorAmerican Cancer Society2 Commerce Drive, Suite 110Bedford, NH 03110katherine.klem@cancer.orgphone: 603-471-4112 fax: 603-472-7093
Jaime Contois
NH Organizer
Working Families Win
15 Eagle Court
Keene, NH 03431
office: 603-354-0108
cell: 603-504-2906
Sabrina Johnson NH Citizens Alliance
Lisa Kaplan Howe
NH Voices for Health
Zandra Rice Hawkins
Granite State Progress



It takes your food seven seconds to get from your mouth to your stomach.
One human hair can support 3 kg (6 lb).
The average man's penis is three times the length of his thumb.
Human thighbones are stronger than concrete.
A woman's heart beats faster than a man's.
There are about one trillion bacteria on each of your feet..
Women blink twice as often as men.
The average person's skin weighs twice as much as the brain.
Your body uses 300 muscles to balance itself when you are standing
If saliva cannot dissolve something, you cannot taste it.
Women reading this will be finished now.
Men who read this are probably still busy checking their thumbs.

Sunday, March 22, 2009

Home Second Home

I called the Doctor on Call at Dana Farber yesterday when my temperature had spiked to 103.5.
I felt terrible. My mouth felt like it could crack and slough out due to how dehydrated it was from mouth breathing all night.
No amount of chap stick and fluids was making it feel better.
Alyea was out of town. I was directed to his coverage. When I spoke, I reviewed my history, specifically the fact that I was seen on Tues, diagnosed with Para Influenza and given Augmentin. My fever had subsided slightly but had now jumped higher than before.
Then, Dr. educated, with his superior accent, proceded to tell me if I felt “totally crappy.” Something was wrong.
TOTALLY CRAPPY?! Yes. I do feel totally crappy!
Did I use those words to describe myself or were those descriptive terms his?
Then he said it again, “If you are still feeling totally crappy. . . . . .
Now, through all the snot, difficulty breathing, eyes watering, and pain, I’m trying not to laugh.
“I’m going to go to the emergency department at Dartmouth Medical.” I told him.
He agreed this was the best idea, said my actual doctor would be available by the end of the day, and he would be available as coverage if anybody needed to speak to him regarding my care.
I went to the ER where I was seen promptly.
I forgot how friendly and welcoming the staff at DHMC was.
It feels. . . . . .homey.
Yes, I said it, homey.
I’ve spent over 6 full months total here as an inpatient. At one point, one Christmas eve, X asked me if I could spend the night at his house.
This is where his idea that I “live at the hospital” comes from.
I was also treated by two nurses who had experiences with cancer themselves.
Anyway, a little Tylenol, pain killers, cetriaxone, and zithromax for my pneumonia did get me to feel better, but not completely coherent.
I decided it would be a great time to learn how to post on my facebook page’s wall via my blackberry while waiting for my room.
The message: This is my first message from my blackberry. I’m in the hospital. Say some prayers.
I thought this was simple enough.
I didn’t anticipate the mass remessaging I would receive from a couple simple sentences.
I am definitely receiving prayers and hugs from all over the country all the time. I was smiling through my haze of fever, bacterial infection, and medications.
Through bouts of sleep and consciousness I was transferred back to my old wheeling ground (for some it could be stomping ground, but I wasn’t doing much of that while I was here).
I saw nurses you took care of me years ago. I remember how comfortable they made me and who educated they are.
I feel so safe in their care.
I remember seeing Dr. Meehan, and talking to him briefly. I tried to high-five him when he went to leave in advance for making me feel better.
Something tells me patients don’t usually high-five him when they feel terrible but know they will feel better.
I give high fives. I do touch down dances.
Life is a game. I like to play.
Everytime I get sick and begin the road to recovery, I celebrate. I celebrate like an athlete, scholar, or writer who has accomplished a goal. Every small step, every virus or bacterial infection I overcome, is a victory.
I give thanks. I throw an internal party. One less thing I have faced that did not kill me. It made me stronger.

Update From Dad

Hi to all
Sorry I haven't written in a long while. My favorite computer still won't let me email out. I don't have all the addresses on my work computer.Spring is finally here. Hillary has made it through the winter months without catching anything. Last week was her last medicine she needed for the graft vs host disease. She has stayed germ free for 5.5 months. She was doing great until this week. She was just admitted into Dartmouth today for Pneumonia. Her fever spiked to 103.5. She had gone to Boston twice this week when she started to feel it coming on and put on anti-biotic. I don't know how serious this bout is. I think I have become numb to the symptoms and just don't want to think about a bad outcome.. When she feels good you would never know she was sick at all. She is bubbly and determined and full of life. We have had 3-4 weeks of Hillary feeling much better. Hillary came out of her semi sterile environment to speak on legislation before both the House and Senate her in NH. Let me tell you she is dynamite. She made strong points with solutions to some of the Health Care problems. She has had nurse training and real time hospital training for the last 8 years!! When she set her mind on something nothing gets in her way. Unfortunately even she can get sick of politics. Other than this everything is normal around here. Ok we don't know what normal is for everyone else. Please keep Hillary in your prayers.Vic and Nancy


“Those red spots on your neck, Are those part of your graft vs. disease rash?” I’m asked by the resident upon my admission to the oncology unit.
“No. No. Those are scars. That’s the road map to my years of care. The rashes are on my back. Inspect my stomach, and my breasts, those are graft versus host. I also have some gritty eyes and mouth changes.”
The resident lifted the flashlight to check out my mouth: diffuse white patches from an oral thrush I’ve be fighting. No amount of Nystatin and scrubbing has made that want to leave. Along with this there are white patches signifying GVHD.
I have chronic GVHD, lifelong. My options are to learn how to deal with the bothersome side effects. I do okay. I use artificial tears a couple times daily. I use nasal sprays to keep my nasal mucosa moist.
I lotion my body after I shower, hoping to combat dryness that could eventually lead to ulcerations.
I’m all about prevention these days.
My health adventure started on Monday, when I first spiked a fever. Uck. No. A fever. I try to avoid those like the plague.
Now, Saturday, I’m in the hospital. I couldn’t avoid the admission. I tried so hard.
I was seen at Dana Farber on Tuesday after I spoke to the senate committee regarding a bill that would create an uncompensated care fund through the starting of a commission. It is Senate Bill 158. Please, support this bill.
I’m all for this idea. I would love to be a part of getting NH’s most innovative minds together to search for a way to reform health care so the system is more user friendly.
On Tuesday I was diagnosed with the Para Influenza (cancer patient flu). I was given antibiotics for the bacterial infection that had arisen in its wake.
I still felt feverish. But it’s normal to keep the fevers even a couple days after treatment has begun.
I took the route that I would rest. I would also drink lots and eat healthy, but oops, sometimes our best intentions can’t overcome the reality.
The reality is I am still severely immunocompromised, even though I don’t like to admit I am.
All that healthy eating and caretaking just wasn’t enough to stimulate the immune system.
The augmentin I got Tues. worked for a couple days.
Then all hell broke loose.
I was going to lie in bed all day this morning and be miserable when mom stepped In and made me take my temperature.
It was 103.5.
When I moved from the bed, I felt chilled. All my muscles ached. My mouth was a big dry mess from being unable to breathe through my nose all night.
I could feel the film of plaque over my teeth and my nasty chapped lips stuck together.
Urg. This is miserable.
I forced myself into the shower so I could feel some semblance of humanity before I hopped in the car to head for the Emergency Department.
Every minute an ambulance is turned away from an emergency department.
I’m really glad I wasn’t turned away to suffer with my pneumonia privately. All the fluids and healthy eating in the world still would have left me dead without some antibiotics.
I was quickly diagnosed with pneumonia and started on Ceftriaxone and zithromax IV. I had the gamet of tests: blood cultures, chest X-ray, urinalysis. They all need to be taken to determine the exact sight of the disease.
My fevers have continued to rise and then go away with Tylenol. I wish I could just get a standing order for some of the Tylenol.
It’s my new best friend now. It’s my new favorite friend.
If I don’t get my Tylenol, I’m way too hot. Hot, HOT, HOT. I’m uncomfortable and will not move until I get it. Then, when I get it, I start sweating, and sweating, and sweating, I‘m sweating it out. My fever is breaking.
I am still confused, mostly from the fever and the medications I have taken. I’m having trouble writing.
I had to turn off my IV fluids to write since I didn’t appreciate that the line was placed in the center of my antecubital.
Now that’s been moved, The IV team just came in and placed the line somewhere more friendly for writing.
I think I’m going to fold up the computer for tonight, and read what I said in the morning. I’m not sure I was so coherent.

Friday, March 20, 2009

Good Facts to Know

I thought these were some tips and facts worth knowing. For the full article see:

Find the medical center with the longest track record, best survival rate and highest volume in the procedure. You don't want to be the team's third hip replacement, says Samantha Collier, the vice president of medical affairs at HealthGrades, which rates hospitals.

A 2006 study from the Institute of Medicine found that hospital emergency departments are overburdened, underfunded and ill-prepared to handle disasters as the number of people turning to ERs for primary care keeps rising.

An ambulance is turned away from an ER once every minute due to overcrowding, according to the study; the situation is exacerbated by shortages in many of the "on call" backup services for cardiologists, orthopedists and neurosurgeons. And it's getting worse.

About 2 million people a year contract hospital-related infections, and about 90,000 die, according to the national Centers for Disease Control and Prevention. The recent increase in antibiotic-resistant bugs and the mounting cost of health care -- to which infections add about $4.5 billion annually -- have mobilized the medical community to implement processes designed to decrease infections.

Here is some advice from me:
If you have a serious grievance or concern and feel you are getting no where, ask for Quality Control, Quality Assurance/Improvement, or the Nurse Supervisor.
If these avenues fail, pick up the phone, dial the hospitals general number, ask the operator for any of these titles.

Helping My Body Help Itself

I’m sick.
I’m talking real sick: not moving beyond my bed, bathroom, and kitchen, massive sweats when my fever breaks, my entire head is stuffed with snot, and all my muscles ache sick.
This is the flu if you are a cancer patient.
I could be admitted to the hospital for “supportive care.”
This is intravenous fluids to keep me hydrated until the virus runs its course.
I am at risk for dehydration.
I’m working to drink 12oz. an hour to prevent this.
I’ve finally realized, I don’t have to drink water. I can drink whatever hydrating I like. If you find yourself in the same situation, even if you just have the flu, drink anything: Gatorade, powerade, water, apple juice, anything hydrating.
I love RW Knudson’s spritzers. Thank you Dr. Houde and all the people at the ortho office in Claremont for introducing me to these in a care package.
I’m chugging red raspberry and cranberry organic 100% juice spritzers as we speak.
Hallelujah to you.
My drinking is complicated by an oral thrush in my mouth that I’ve been desperately trying to get rid of for weeks and ulcers due to graft vs. host disease.
Thrush is a common problem among the immunocompromised. According to Wikipedia: Oral candidiasis is an infection of yeast fungi of the genus Candida on the mucous membranes of the mouth. Oral infections by Candida species usually appear as thick white or cream-coloured deposits on mucosal membranes. (
Graft vs. Host disease is far more rare. It occurs specifically with a bone marrow transplant, more specifically, it happens with an allogenic transplant (unrelated donor) who is mismatched (not exactly compatible) and may be acute or chronic.
Wikipedia is also a great resource on the subject. It includes links regarding many complicated aspects, as well as links where the disease is addressed in popular culture, such as an episode of House. See it at
It cause ulcers and damage most commonly to the skin, eyes, and mouth. I have slight problems with all three. Eyes become scratchy and painful, like a person is rubbing sandpaper on your eyeball. It can be relieved with eye drops. I use these a few times daily whether I feel the pain or not.
I don’t want to go blind.
My skin has a rash. Generally this is seen on your back, legs, arms. I have rashes here also, but it is worst on my breasts, specifically at the skinfold where my breasts reach my ribcage.
I’ve heard something similar referred to as “chub rub” by my friends who get chaffing in this area. I’ve seen a far worse case where a woman with peripheral vascular disease had an ulcer that formed a whole in this area.
I almost passed out treating that one.
I use lotion at least twice daily to prevent this from worsening. I use LUSH lotions.
As far as my mouth, well, that’s a big problem. Pain could stop me from eating and drinking. This is what pain control is for.
If you or someone you love is experiencing this, this is not the time to be a hero and look tough. It’s time to do whatever you need to do to eat.
If the only way that can be done is to load up on narcotics, take the medication. If the is still a problem with intake, go to your doctor or the emergency department.
People die of the flu.
The pain and aches can be so severe I refuse to move, even to roll over. Lifting my arm for a glass to drink takes all my strength. I can’t even sit up. I certainly can’t walk to prepare my own food.
Every action, every movement, seems to be a monumental tasks.
Having experienced this for years now, I’ve dealt with this in many ways. I’ve been admitted to the hospital. I’ve had my sister or my mother prepare food and spoon feed me.
Avacodos are the one food you can solely survive on. I eat a lot of guacamole.
I eat hummus with soft multigrain tortillas. I eat cucumbers. The coolness from the fridge soothes my mouth.
People make me smoothies with protein powder (carnation instant breakfasts are my favorite) or ensure blended with yogurt and fruits.
Vanilla soy milk, vanilla carnation instant breakfast, rasberry yogurt and a banana makes my favorite smoothie. If there is no caretaker and no energy to make this, I can eat sorbets or yogurt.
I eat whole grain rice (Uncle Ben’s has a 90 sec version) that I combine with refried beans (It’s in a can. Taco Bell makes a brand sold in the supermarkets).
I can make this alone at my sickest.
Tyson has frozen grilled chicken that could be cooked and thrown in.
I eat eggs with milk, cheese, and salsa thrown in.
All of these foods are soft. They do not irritate my mouth. They also possess a combination of nutrients that will allow your body to thrive and heal.
I try to get my protein, whole grains, fruits, and vegetables all together in the easiest form possible.
I also actually like what I eat.
This is my master plan for helping my body help itself, and hopefully, keep me out of the hospital in my nice, cozy, clean (thanks mom) house.

Thursday, March 19, 2009

Patient Shifting

Recently, in my political endeavors, I've been hearing a lot about, and I've spoken a lot about, cost shifting.
Cost shifting is what is happening with uncompensated care in NH.
Medicaid will not reimburse complete care costs. Those costs still exists. The money does not magically go away. Nonreimbursed costs go towards the hospital or on patient bills.
A scary consequence of this cost shifting is that hospitals can not afford to provide care, resulting in what I call "patient shifting."
Children's Hospital in Boston has done this by refusing to accept NH Medicaid. Patients with this insurance are not accepted. The patients must still be treated, and are often treated at Children's Hospital at Dartmouth (ChaD).
The cost shift due to medicaid reimbursement budget cuts are projected to cost Chad $10 million in the next two years. While reimbursement is going down, the number of patients are going up.
Eventually, this could bankrupt ChaD. They may begin to refuse NH Medicaid as well.
They also may begin to refer cases they once treated to emergency department or outside satellite clinics due to patient overload.
Even being the best patients and patient advocates could die due to inability to access care if we continue down the path we're going.
I've seen it all ready.
Even if you follow the steps I've written below to gain access to your provider quickly and efficiently, You still may encounter problems.
Everybody is human in these encounters. It is nice to think providers are impervious to sleep deprivation or distractions like screaming children. Patients need to think this to feel safe.
I know their human. I don’t like it. Ignorance is bliss.
If you’re a patient, listen to me carefully, your doctor, nurse practitioner, nurses, techs, aids, secretary and anyone you encounter in your attempt to access treatment is a demi-God. They are superheroes. They possess powers to make you feel better. You can trust them with your lives.
Good, now that you’ve taken that all to heart, sleep easier at night.
If they do accidently show their humanity, we as patients, ned to continue to fight like hell.
If you do feel unsafe, If you do feel like you are in imminent danger of losing your eyesight, perforating your bowel, going into septic shock, fight like your life depends on it.
I want the people caring for me to like me.
I want to live more.
As a nurse, I thought because I had experience, because I had seen travesties, because I had immersed myself in different cultures, because I had cared for people of all different ages and in all different stages of dying, I understood what they were experiencing.
Since I thought I understood, since I was working so hard to help them, I felt entitled to comment and judge their reactions.
I didn’t know anything.
When I talked about dying being unable to access care, I thought about the single mothers, the high school drop outs, the blue collar workers, all who just didn’t understand the system.
I did not know that dying trying to access care could happen by calling providers and being told there were no appointments available.
I did not know that such a thing as “patient shifting” could exist.
I heard about it on documentaries.
It was an urban legend.
It was a terrible story perpetrated by someone who knows someone who has a cousin.
It is very real.
People who are not forceful and adamant, people who are sick and too weak to fight, people who are scared to death and are desperately seeking care like a person drowning would struggle for air, die.
I’ve called one person to be referred to another then to be referred to another only to be told I was not calling the right clinic.
While I’m frantically trying to get treated, I’m simultaneously getting sicker. I start to feel weaker. I start to wonder if the fight is worth it.
I start to think I should listen to my body. Maybe I should go home and go to sleep. My body wants to rest.
I know my symptoms could represent imminent danger. I know I could die if I go untreated, but if nobody wants to treat me, if I’m in the least bit ambivalent about carrying on fighting my illness, I may just listen to my body.
I may just agree with what I’m hearing: that the problem is not imminent, that it is not a symptom of my treatment, that the hospitals are too busy and overburdened to treat me.
Maybe I should go home and wait out the disease.
Maybe I should just go home lay down and sleep.
Maybe it is time I die since I am so tired, so weak, and having trouble thinking. The whole equation is adding up to equal that I should just die quietly.
I am clearly a burden. I am a burden on my family. I am a burden on my friends. I am definitely a burden on the system.
This feeling becomes stronger every time I experience a symptom that makes me fear for my life and encounter obstacle after obstacle seeking care.
People like me die trying to access care. Critical care nurses, Bronx boot camp trained to be tough and advocate for other patients die advocating for their own care if they are ineffective.
I know they do. I’ve come too close too many times.

Patient 101

I’ve been sick so long I forgot some very basic problems people have accessing care.
Actually, I even forgot that people have a tendency to freak out when someone is extremely ill, or possibly dying, in their presence.
I worked to remove this fear from me long before I ever became sick.
I decreased my anxiety for these situations by exposure. A small level of anxiety is necessary to intensify accuracy and perceptions. Too much anxiety will cause the inability to think and cope with the stressful situation.
Anxiety levels are measured based on heart rates and other nervous system reactions. Your body’s natural response to stress begins to have a tolerance after frequent exposure to a similar dangerous situations.
I don’t necessarily feel anxiety anymore. Actually, I forgot anybody ever did. I also forgot that many people do not know some very basic, simple steps to accessing care quickly. Here are the basics:
1. Know your Primary Doctor and their number. Your primary doctor is the doctor you see the most. It’s your go-to guy or gal. It may be a specialist, in my instance, my stem cell transplant specialist. I also have back up numbers, but let’s keep it simple. KNOW YOUR SPECIALIST AND THEIR NUMBER. KNOW HOW TO GET AHOLD OF THEIR COVERAGE (WHOEVER IS TAKING OVER FOR THEM) AFTER HOURS.
2. Call. Know their first name and last name.
3. Know your diagnosis (ie Hodgkins).
4. Say why you’re calling. “I don’t feel well” is not okay. “My central line is red and hurts,” “I have a fever of 102,” or “I’ve been throwing up for three hours straight.” Works.
5. Drop the modesty. If you are urinated blood, that needs to be said, clearly.
6. Ask for the doctor to speak to the provider directly.
7. Do not take no for an answer. A patient/provider relationship can be likened to a consumer/business relationship, if you have emergent fears, trust you gut, demand what you want.
8. When speaking to your provider, Do not sugar coat symptoms. If you have excruciating abdominal pain. Don’t talk about how great you have been doing. There is a reason you called.
9. Answer their questions. Do not hide symptoms because of embarrassment.
10. Follow their advice. If it’s sleep through the night, call in the morning. Do it. If it is do not pass go, get to the ER, do it. There has been a lot of education and training involved in their answers. Defer to their judgment.
11. Have your caretakers know how to do this. Give it a trial run while you are healthy. This will ease the stress if you need to call in the middle of the night, are groggy, and having trouble thinking.


My test results came back from my nasal washing Tuesday. I HAVE THE FLU!

The Last Email

A friend of mine recently picked up her family and drove 3 hours to be at the bedside of an ailing relative.
The reason: her husband had received an email from the relative telling him how proud the person was of him, what a wonderful family he had, and how his life had turned out well.
He also added that he understood that he was not just around the corner.
My friend and her family dropped everything and left to see the relative the next day.
He is elderly and suffers from a blood cancer.
Blood cancers include leukemia, myeloma, and lymphoma.
I have a blood cancer.
I have also written emails like this relative.
I have written them when there was clear evidence stating that I would die and possibly soon. I wanted people to know the good that they have brought to my life, and even if we haven’t spoken, that I remember.
I want people to know they are important.
I want them to remember that life is what happens in between rushing to the grocery store or carting kids from activity to activity.
I like to say specifically what I remember and enjoyed most.
These events are usually simple, a time when we laughed ourselves to tears, got lost on a road trip, pretended we were walking to our car to watch spot seekers follow us only to run off laughing, or pointing and screaming at strangers on the subway acting like we had spotted a celebrity when in reality the person was not Usher, Ciara, Bon Jovi, etc.
The time spent together, relating to one another, is what makes life worth the hardships.
Too many people understand this too late. It’s the reason people call lost or estranged relatives from their death beds in hopes of making amends or telling them how important a role they served in their life.
Stepping towards the end, we know the little things count. We realize who counts.
I’ve never heard a deathly ill patient say they wished they watched more tv. I’ve never had someone struggling to breathe ask to read a gossip magazine.
These things provide distractions. They are good and available when reality has become too stressful. They are an outlet.
Life happens elsewhere.
Life happens in everyday moments at the family dinner on Sunday night that you hate attending but do anyway. Life happens at sporting practice when you’re high-fiving other parents and snapping pictures because your child finally hit the ball off the tee or sunk their first free throw.
I know this because I’ve sent these last emails before desperate to make others aware that they are important, that their good deeds are not unnoticed, and that even the simplest gestures have a resounding effect.
Like the proverbial butterfly that flaps its wings and causes a tidal wave on the other side of the earth, when something life changing happens, we rarely realize the impact and the people involved until our ability to reach out to them has dissipated and our time is finitely limited.
In these moments, the trials and tribulations have subsided, and the most important lesson to leave on earth to those who remain is how they have contributed to making life great and ask that they continue to do so even without you.