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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Thursday, April 30, 2009

Replicating Symptoms from Cheotherapy Among the Healthy



I’ve devised an exercise in my head to educate people regarding how it feels when recovering from chemotherapy.
Feelings and symptoms of this magnitude can not be described in words. My former hematologist told me once about an excericse bike he had used at a conference.
The gears had been altered for maximum resistance.
This was done to illustrate to healthy people exactly how it feels to move after receiving chemotherapies.
I thought this idea was great.
During treatment, I equate standing for 15 minutes of standing equivalent in energy expenditure to my previous 12 hour workday.
Examples like this have been done with teenagers and pregnancy for a while. The situation is simulated to form an indepth holistic understanding of the experience. A stomach can be strapped on in varying weights and sizes.
Once pregnancy simulation is over, the stomach turns into a cranky screaming robot baby with colic.
People get the picture pretty quickly regarding how miserable pregnancy and parenthood could be, especially if you are not prepared.
This can be done for chemotherapy to expand on the bike experiment and to replicate my experience.
This way everybody could be educated almost how it feels to be in a body like mine.
I say almost, but not quite, not ever, doing that to people would be sadistic. It would never be ethically approved.
I would start slowly.
Fatigue is the most common complaint with chemotherapy. There is very little that can be done for chemotherapy induced fatigue.
Making coping with fatigue more difficult is that the word fatigue, and anything else in the English language, does not describe how diffuse the problem is.
It is not being tired. It is not needing a nap. Think of the day that you felt the most fatigued, that you just could not go on. Think about 2 pm at work when you’re reaching for that cup of coffee or tea to stimulate yourself for the rest of the day.
Then multiple that feeling by 10. The fatigue is painful. Moving your arm is a chore.
For a healthy person to feel this, I would strap them in weights. I would start in the legs and arms. I would lay them down, strap them with weights, then ask them to do their daily routine.
Then after a normal activity of daily routine is done, such as getting breakfast and taking medicine, I would have them repeat this, with more weights.
To simulate how respiratory complications feel in combination with fatigue, I would strap weights, tightly, to the chest.
Pneumonias do feel like there is a weight on the chest. So don’t mediastinal masses (tumors in the middle of the chest) that lymphoma patients frequently present with.
If you don’t feel like you are choking and suffocating, you are not doing the exercise properly.
I can feel tumors, masses and infiltrates. A tumor in my neck often feels like a person constantly pressing on the apple in my throat, all day, all the time.
Push on your throat in the center at the trachea, now try to swallow. Try to lay down in bed and get comfortable with all those weights strapped to your arms, legs, and chest.
Just, for the fun of it, try to roll over. Try to cross to the other side of a king size bed to reach the phone.
It feels like crossing the Himalayas. If you wonder why somedays you call and I don’t pick up, now you know, the phone is on the wrong side of the bed.
These things are just a fun place to start, but there is more, so much more suffering to simulate.
I’ve been through a lot of it, I want you to know how it feels sans cancer.
The feeling in my hands and feet were the first to become impaired as a chronic side effect of chemotherapy. This is called a neuropathy.
It can be painful. Mostly, it impedes functions.
Place two pairs of hospital issued rubber gloves on your hands and feet. Then try to go about your business. Try to open child proof pill bottles. Try to pick one single pill out of that bottle. Try to dig out those individual wrapped medications in foil, like Benadryl, kytril, etc.
I will take ativan for nausea even though I dislike the mental haze because I can get the pill easier than kytril.
Good luck with trying those tasks. It’s one big pain in the ass.
These are all special starter steps.
This doesn’t even delve into what it feels like undergoing intense therapy with muscle atrophy. I haven’t thought of a way to recreate that.
If you want to really go all out, feeling the feelings of a patient, bowels are frequently effected in care. Every aspect and possible problem related or associated with the bowels can occur.
Nausea, vomiting, diarrhea are all common complaints.
Most frequently I experienced abdominal cramping-like symptoms. This is accompanied by cancer pain when tumors try to take over space in my abdomen.
I can’t think of how to replicate this without semi-self mutilation. I liken it to lining up needles all around the abdomen and poking. Leave the needles in, walk around a little bit. Don’t want to walk? The Pain is too much? Just try to move to reach your narcotic bottle.
Use your imagination. You’re wincing in pain aren’t you.
But this is not all, this is not the cramping. Woman, let’s talk cramping. Men, you may know how we woman can behave when we’re faced with cramping pains.
It makes us moody, cranky, and down right unfriendly. There is too much uncontrollable pain to simultaneously play nice.
People wonder why I get so cranky and intolerant. It’s from terrible, excruitiating pain and discomfort.
Multiple those abdominal cramps x4. Think about suffering from this for just one week after a therapy infusion.
Now, with the eights, the gloves, and the cramping pins and needles, try to make a phone call for help.
Imagine waking up and feeling like the sand man came and gave you a beat down in the middle of the night. Your family has left for school and work. You need to move.
Put a sweat, soothing voice in the background for music.
Have it say, "Just relax. Go to sleep. Rrreeeesssttttt. You need to sleep." Make sure that voice resembles your inner voice, the one that comforts you in time of fear.
Your body really wants to lie down and close its eyes. It is asking you too.
Then muster your courage, scream in your head, "You're trying to put me into a coma! I won't be found for 8 hours!"
Try dialing those 10 digits to get ahold of your provider.
I’m not trying to scare anybody.
These symptoms are all manageable with modern day medications.
It is important to know your bottle and take your medications before the pain becomes so severe it interferes with life.
When I saw interfering with life, I mean if it interferes with moving, walking, rolling over, eating, swallowing.
There is a lot of shame associated with the use of controlled medications.
Micheal J. Fox says frequently about his disease that “vanity is the first thing to go.”
Diagnosis and treatment is not the time to worry about whether your neighbor, mother-in-law or babysit think you’re a crazy, raving drug addict.
Now is the time to do what needs to be do to survive. Medications are for self preservation. If you are suffering and allow the side effects to stop you from moving, other more diffuse problem will develop from lack of activity.
These problems include respiratory infections, muscle atrophy, failure to thrive, ulcers, embolisms, inability to walk, sit, and on and on and on.
Medications are available and prescribed to prevent these problems.
A physiological addiction is easier to treat than the aforementioned problems.
I would rather have a maximally healthy addicted body in the face of my cancer than a wasted, atrophied, unmedicated one.
Now, at least, hopefully, people can experience some of the experience to be in the body of a chronically ill person, specifically a cancer patient undergoing treatment.
***FYI- If These cartoons really seem to illustrate my experieces, it is because they are drawn by my friend T. McCracken special for us. Google her or seehttp://members.pioneer.net/~mchumor.html .****

Memorial for Jayne

There will be a memorial for Jayne Mangino exhibiting her life's work as a photographer that will take place Sunday, May 17th from 1-4pm at Art-O-Mat, 46-46 Vernon Blvd.; Long Island City, NY

Please take a moment to think of Jayne, who was a dear loved on and confidant of mine during our simultaneous battles with cancer. She will be greatly missed. Her spirit lives on in her art.

Tuesday, April 28, 2009

It's On!



It’s morning and the race is on!
I’m coming out of the gate and I’m on the move
I don’t know what I’m racing against or why I need to do is so quickly, but I just know I do.
I’m sure it is the steroids.
To explain steroids simply, they are an adrenaline rush in a pill.
You know the feeling that comes from the drop in a roller coaster or base jumping? Well, that’s available in pill form.
I don’t suggest thrill seekers everywhere start doing prednisone as an alternative to sklpunking, but it gives the same feeling.
The problem is, it gives the same feeling and gives and gives and gives with no end or resolution in site.
I have the constant need to accomplish or to finish something.
I assume this is a conditioned response, when adrenaline is usually sent into the system it’s for fight or flight. It is useful to survive, to finish that last twenty minutes of the soccer game to attain superhuman strength to lift a lawn mower off a person, it’s not meant to be left idle with no outlet.
But it is within me.
I’m on big ball of adrenaline with no real outlet.
When this is combined with the clear Post Traumatic Stress Disorder I have from years of wondering if I’m going to live or die day to day and my constant anxiety that I just can’t seem to get a handle on I suggest you all just move out of my way.
I’m one big human bulldozer.
However, You know me, I’ve found things to do. I’ve found plenty to accomplish.
I have been given the ability to think more clearly with my newfound energy.
I’ve made my decision regarding my treatment and Plan Y.
I Will be following through with the T Lymphocyte infusion at Dana Farber to complete all the potential that can be received from my allogenic stem cell transplant if the cancerous nodes still exist in June.
I haven’t decided if I will undertake this procedure in June or wait until the end of the summer.
I need more information regarding the treatment, side effects, etc.
I have no idea what a T Lymphocyte infusion entails. I just know it should boost the anti-cancer properties of Simone (my immune system).
I will continue with Dr. Klema, my chiropractor and accupressurist.
I will continue to take a combination of supplementations. I will keep two that I found to be effective within the German regimen I was trying: Berberis Hommaccord (an anti-inflammatory) and X-Ray 30C (to facilitate detoxification of radiation).
I will take the “Standard Process Protocol for Hodgkin’s Lymphoma.” These are whole food supplements. It will be like adding to my diet. These bills include thymex, hepatrope, & spleen PMG.
I’ll add these in addition to the strict diet I acclimated myself to finally: 75% fruits and vegetables with very little red meat. I eat lots of fish.
I also add tons of herbs. Herbs have amazing properties that function in similar manners to chemotherapy agents that use antiogenesis factors, anti-inflammatory powers, and healthy immune system boosting abilities.
A favorite is turmeric.
Cancer patients, go buy this now. If you can only have one herb, turmeric is it. It is used in mustards.
I’m also sticking with the necessary baseline medications from my transplant: acyclovir, bactrim, folic acid, restasis, corticosteroid lotions, oxycontin and oxycodone.
The rest of my medications are for symptomatic management.
I have a lot of those.
I will remain incontact with Dr. Jacob of Wesserberg Germany. Her reputation procedes her.
I may consult a Dr. Ralph Moss online to confirm the self health actions I am taking are correct in his opinion. The barrier that has stopped me from seeking his advice is the high price of $300 that needs to be paid without ever actually speaking to him.
Eitherway, I would like to try him to see if he is a valid practitioner of alternatives. He is well known in Manhattan. You can goggle Ralph Moss online. He publishes a weekly “Moss Report” I have signed on to receive that sends recent findings in cancer research.
He has also published “Where to Go” series, which oulines alternative treatment centers in areas surrounding major treatment centers such as Boston (I have it, comment if you want it), New York, Houston, and GERMANY!
Jon, Xander and I have gotten all the paperwork together for our passports if this option has to be excercised.
If it doesn’t, great, but if it does, we want to be as prepared as possible.
If it’s meant to be, everything will work itself out. We’ve now become accostumed enough to be semi-comfortable with relocating for care.
But just like the Boy Scouts say, “Be prepared.”
I am.

Monday, April 27, 2009

Math Man

Xander has been driving me crazy. He has been driving Jon crazy. He has also been driving all our adult friends crazy.
Xander is in an all-out math frenzy.
He just discovered money.
We’ve been working hard to teach him financial responsibility. Experts say age six is when the concept of money should be introduced with an allowance.
The concept of working to earn money needs to be understood.
Xander gets this. He knows he gets paid for a service.
Ever since we saw “Hotel For Dogs” his little entrepreneurial wheels have been churning in his mind.
He’s been dog sitting for my parents ever since.
When asked to dog sit, he says upfront what is included in the fee (i.e. twice daily feedings of dog food and water, walks, and playtime). He’s also included special “dog training” by sitting the dogs in front of “Go, Diego, Go” to show them how to rescue dinosaurs.
There was that little mishap in the fall where X and a friend decided to wander off. The cops were called in and they brought their dogs.
What Xander remembers of the situation is: Dogs can be trained to rescue people!
He wants to train dogs to rescue people!
He says he wants to “be a cop with a dog.”
Sounds good to me, but clearly, he knows he needs to make some cash too.
His master business plan: make money while caring and training dogs.
I’m so excited that his six your old mind works like this.
We have a business man on our hands.
X has been earning an allowance of $2 a week for taking care of our animals (Josie and Nika). If we doesn’t, his pay gets docked.
Whoa, what a motivator.
Now, that he has some money to his name, we’ve started a savings account, and he wants to count, count, and recount what he has, over and over and over again with everybody he thinks is capable of doing the math with him.
He has a money box that he wants to bring everywhere. He wants to know how to count by fives, then tens, then twenty-fives, hundreds, and two hundreds.
I sat him in front of some spiderman math workbooks on Tuesday when he wasn’t feeling the best during SCHOOL VACATION, he went through pages like it was the most enjoyable event of the week.
Forget about swimming, the playground, the four wheeler, momma, we’re doing math!
When we talk about math, his eyes light up, and he gets excited.
The apple doesn’t fall far from the tree on this one, both Jon and I, independently at young ages would hang out and count our money.
We would pour our our piggy banks and separate the pennies from dimes from quarters and count. Then we would add the numbers on paper.
I would take it to the bank.
To be real, playing with numbers is a hobby of ours. Jon is an engineer.
I make it a mission to figure out how to squeeze every single dime and rebate out of shopping. It’s a challenge, almost sport-like, to see how beautifully I can decorate a space for the cheapest price.
I think I do okay. Our patio is coming along nicely from solely flee market and “seconds” finds. You’ll never be able to tell.
It’s a green thing, and Xander doesn’t even know we’re trying to teach him how to save the world while living comfortably.

NH ADVOCATES AWAY!


Thank you for contacting your Congressional leaders to support the Federal Budget.

Because of your voice, and those of other advocates throughout NH, the first stage was successful.

Our work is not done!

The House and Senate are working out their differences and coming up with a final Budget Resolution.

It is expected the final votes will take place Tuesday and Wednesday (April 28th and 29th). The final budget, which includes input from both Republicans and Democrats, will include the option to stop endless delays in the Senate over health care and student loan reforms, allowing urgently needed legislation to pass with a simple majority vote.

The Budget Resolution is incredibly important - it provides a blueprint for Congress to craft 2010's federal budget

Everybody Make Budget Resolution Calls

Call Senator Jeanne Shaheen at: (603) 647-7500
Call Representative Paul Hodes at: (603) 223-9814
Call Representative Carol Shea-Porter at: (603) 641-9536
Say to Sen. Shaheen, Reps. Hodes, and Shea-Porter:
Thank you for supporting the Federal Budget. Please continue to support healthcare reform, access to education, and clean energy by voting to support the Budget Resolution.
I urge you to follow the reconciliation instructions recommended to ensure healthcare reform and access to education are supported by the majority.
FYI- Sen. Paul Hodes tirelessly works for healthcare reform. He deserves special attention and thank yous.

Call Senator Judd Gregg at: (603) 225-7115
Talking points for Sen. Gregg:
Support Granite Staters by voting to support the Budget Resolution to ensure we have healthcare reform, access to educaiton, and clean energy.
Send email to mailto:sjohnson@nhcitizensalliance.org? and tell us how your call went!

Sunday, April 26, 2009

I was getting ready for bed and trying to take my meds last night, far too late last night.
It was 10:30.

That's past my bedtime, far too late for me.

I had thought about taking my meds earlier, around seven, when I had just gone into my house to wash up.

I call it "refreshing".

I can't stand to be dirty. I have to clean the germs off.

Cancer has officially made me a clean freak germaphobe, as if being a nurse didn't predispose me to that anyway.

I decided to wait on the meds though. I decided I was a big tough girl and could handle staying up to play.

So at 1030, when I got around to to take my meds, I'm going though the process, one bottle after another, left to right at night, across the vanity when I get a pill bottle to whip it open.

My hand shakes.

The bottle slips and swirls out of my hand, the cover releasing on the corner of the counter. Ugh! Dammit!

MY PILLS, all over the floor around the toilet to the tub a whole bottle of bactrim, newly opened.

DAMMIT DAMMIT DAMMIT.

I can't go without those. - can't get a new script I just barely got that script! That f***ing Mexican jumping pill was the very first one!

I decided I would brave bathroom gems and possible disease and collect the pills. I scooped them into the bottle to put them away.

Then I looked at the bottle.

Being a new bottle it looks exactly identical in label to all other medco bottles, everything except the name.

I didn't look and read what I was talking. I just checked the shapes and structure of the label.

I didn't even have to take that pill! I take bactrim in the morning!

Saturday, April 25, 2009

Steroid Induced Accomplishments


I slept like a rock last night.
I probably slept like a rock because I ran around like a maniac all day yesterday.
I’ve been running around like a maniac all week.
It is vacation week.
All you parents out there know what I’m talking about.
You’re child wants to be amused, they want to be engaged, every single second, of every single day.
I’ve found that having Alexis during these weeks actually makes it EASIER.
Two kids, above the age of six, can amuse each other and be left alone to play for a significant amount of time without killing each other.
This resolves the only child problem I have with Xander where he follows me around everywhere asking to do projects, asking to have friends over, wanting to do a hundred different things at once all with me.
I’m getting tired just writing about those days.
You don’t have to have cancer to know how exhausting the constant demands for attention from children can be, no matter how much you love them.
Thanks to the script of ‘roids on Sunday, I was at least able to function.
Oh, Jessie, you were so right, I slept well last night with ambien.
When there is that much chemically induced excitement going on in your body, you need something to stop it in its tracks or it could go on forever.
Yesterday, X and I went grocery shopping in the early AM.
We ran into a friend from his kindergarten class and invited him to play since Dani and the kids were coming to play too.
Now that the weather is nice and we can be outside, my restrictions are less strict. I’m free to see people in the open air as long as they don’t get to close, cough or sneeze on me.
I still have a strict look don’t touch policy.
I no longer have a hide in my house and play hermit policy.
Then, after grocery shopping, (with my mask and gloves on of course) we played outside, then we went in for snack, then Dani and the kids came over.
Then came the good stuff, I decided I wanted a fire place for the summer. I want to do some marshmallow roasting and some s’more making in the back yard.
My budget for this project: $0.
No problem, I’m a scrounger. I love repurposing. I always have. I like to see what I can make out of other people’s waste.
Thanks mom and dad for not needing to use those cinderblocks that used to hold the cover on the pool.
I knew exactly where I could scrounge up some serious cinderblocks to build a fire pit.
What I didn’t account for was just how heavy blocks of concrete are.
I weighed in at 108lbs on Thursday. The blocks must have been 50lbs.
But I was not swayed, oh no, not me. I wanted that damn fireplace for those damn marshmallows.
I was able to move ten and form a nice semi circle that will work until I get the energy to finish it.
Then, Dani and the kids showed up and I recruited them to stack the wood.
Eli and Luke weren’t as excited about this stacking wood project as I thought they would be.
In fact, I was surprised that when I tried to stick them in the back of the truck to go four wheeling around our property and they had no idea what I was talking about.
I thought every country child had at some point but stuck in the back of a truck and driven around the woods for fun?
Maybe, this is not as normal as I thought it was.
I guess that’s just my family.
Since the kids weren’t so keen on my supermomma projects, Dani helped throw some compost into buckets for the garden while we were getting wood.
That woman can really run a shovel.
I know. Take it from a woman with a lot of experience from “St.Pierre University,” this is the family business where I had to work in high school to drive home exactly WHY I would be going to college.
If I didn’t go to college, I would be condemned to run a shovel in the family excavating business for the rest of my life!
If this had happened, I would definitely hire Dani.
Just for fun to make life more difficult in our backyard party project, Dani and I began throwing the wood out of the car while the boys ran to play.
What we didn’t account for was the two dogs, Nika, our german shepard, and Lily, my parent’s golden retriever who we’re house sitting, thinking we were throwing wood for them.
Boy, were they excited to fetch those logs and try to run away with them.
Needless to say, our wood is not stacked. We saved that for another day.
By this time it was 1:30 and officially my nap time.
My mother in-law has been taking Xander in the afternoons so I can honor this three year old ritual of napping around 1:30.
Even with steroids, I still honor this. I don’t think there is anything worse than a tired, steroid strung, cranky cancer patient.
I think I may turn into one of those semi-humans from “I am Legend.”
If you were to combine steroids, hunger, and fatigue, I may well be pimped out as a weapon of mass destruction.
This was my day yesterday. All this was accomplished, and it was only one day of the vacation.
I’ve gotten more accomplished in the last week than in the past year. I’m excited I get to keep taking the prednisone at least for another couple of weeks.
We’ll see what other projects I can do and how many nights of sleeping like a rock I can get.

Friday, April 24, 2009

Good things

After todays appointments, I'm breathing a big sigh of relief.


Maybe it is the beautiful slightly chilled but sunny spring day in Boston. Maybe it's my travel partner, deb a long time family friend who always seems to exude peace. Or maybe its the summer sandals I splurged on for 25 bucks even though I said I wouldn't but couldn't stop myself.


They just looked and felt so right.


Whatever it is I feel and look good.


My prednisone perscription is in place to keep me feeling good and having energy.


There is a plan in place for continuity of care at dhmc for these chronic lifelong gvhd problems. Eventually, I will be weaned from the prednisone and attempt, again, to manage the problems symptomatically with a safety net in place and possibly an inpatient admission.


Now I'm good.


How can I tell?


I'm making plans! Future plans!


I'm not talking graduate school, but at least plans for the next couple weeks of my life.


With my health being so fragile any planning is a luxury I can not afford.


I can not predict flare ups, debilitating pain and fatigue.


What I can commit to one hour I am not be able to complete an hour later.


It forces me to live moment to moment, but it is not very easy to explain this to friends and loved ones who are far.


Of course, good things work themselves out and I am finally back to making some plans!

Thursday, April 23, 2009

I have prednisone!

I have prednisone!!!
It was a hard decision for me to make whether to take systemic steroids or not.
I wanted to manage my chronic, lifelong GVHD symptomatically.
It wasn’t working.
I couldn’t get the medications in a timely fashion.
I was suffering and suffering and suffering some more.
I didn’t want to compromise the long term integrity of my transplant.
Blad, blah, blah,blah, blah.
I was very cranky.
All that pain combined with all those depressant pain killers too do not make a happy Hillary.
I don’t think it would make a happy anyone.
I had options.
I could have been hospitalized and watched carefully while we, as a team, worked out how I could cope with these side effects. I could have traveled to Boston twice a week for
Eventually, we can do this.
Right now, I just wanted to be comfortable.
Prednisone, and other corticosteroids, have some severe side effects.
They scare me.
They always have.
I never, ever wanted to take steroids.
The same way I never, ever wanted to take chemotherapy.
Steroids cause adrenal insufficiency, like Addison’s Disease.
If they’re not controlled, the cause cushing’s disease, an overactive adrenal disease.
They cause mood swings, hot flashes.
They contribute to decalcification and long term use cause bone breakdown.
If not watched carefully, they could kill you.
Even worse, if they don’t kill you, they can make you wish you were dead.
My friend with multiple sclerosis hypothesizes it was caused by excessive steroid use as a child for asthma.
It causes the immune system to be suppressed.
MS is an autoimmune disease.
She was given steroids while her immune system was developing. Now, hers doesn’t function properly.
She treats her immune system like gold. Her body is a temple.
I treat my body like a temple, but if it comes down to live or die, I’m treating my body like an amusement park or a toxic waste dump, everything and anything that could save my life can have a try.
I’m in it to win it.
Steroids, however, have some great side effects.
I feel better.
I don’t hurt.
I can wake up in the morning and move. I can take all my daily medicine without exhausting myself.
Today, I’ve managed to semi-organize the second floor, play hide and seek with Xander, give him a bath, snuggle him and watch a movie, care for him since he says his ear, throat, and stomach hurts (he’s taking augmentin so he’s not bacterially infectious at least).
We made the beds. We’ve drawn pictures. We counted his money. Now we’re doing math while watching The Iron Giant.
That’s not all, oh no, I’m not done, because I have steroids in my system.
I like to cook. I’ve always liked to cook, but I only got to play working mother and housewife for 18 months before I was diagnosed with cancer.
Only 18 months!
I feel robbed.
That is barely enough to move into a house, finish the small projects, decorate, and make the house a home.
I was also simultaneously starting my nursing career, taking my boards, and becoming certified in telemetry, anesthesia, and critical care.
I’m a chronic over achiever.
I’m stating that for the record.
I’m pretty confidant if you’ve been reading me, you came to this conclusion yourself.
Now that I’ve been given artificial energy in the form of steroids (it is essentially an adrenaline pill), I’ve been cooking up a storm.
I made myself a peach yogurt, mango, vanilla soy milk with vanilla carnation instant breakfast smoothie.
I saved half for later.
I made a pitcher of organic green tea spritzer, which is green tea, chilled, then a liter of raspberry spritzers are added with mint.
The mint I would put in a “tea ball” so you’re not drinking leaves. I made this mistake before with some different grown up spritzers.
Now, I do anti-cancer drinks. I call them cancertinis, cantinis, cancervivor spritzers, make it mochas.
I have too much time on my hands, but not enough energy.
Usually all I can do is think up these ideas.
I don’t even have the energy to delegate.
Today I do.
I’ve also made a white chili/jumbalaya.
This is healthy too. It has shrimp, chicken, onions, chicken, chick peas, red peppers, whole grain rice, and loads of herbs.
It doesn’t have just any herbs though. It has herbs with anti cancer power. Tumeric for anti-inflammatory and antiogenesis powers. Oregano, parsley, garlic all have immune boosting capabilities with the power to cut off blood supplies to tumors.
Everything else I’ve made has health rationales too. I’m on a roll.
Thank you prednisone.

Wednesday, April 22, 2009


I think we have all points in our lives when things are so stressful that one more question, one more problem, and we feel like someone is pushing to the edge of our sanity.
Really, let’s be real, I think most of us have snapped at someone when we have too much on our plate, too many classes, too many patients, to many orders to execute and that one extra request is going to make our head explode, and when that happens, the target of our frustration is the person requesting that damn favor, errand, chore, order, etc.
You’ve hit a wall. Your brain has been overloaded. It has all the information it can handle.
Now, imagine this terrible stress, day after day, month after month, year after year.
Yes, folks, this is where I live. This is where my family lives.
After a while, you get accustomed to the stress. You base level stress rises, like a pain tolerance.
What shock and horrify other people fails to even register on your radar. It certainly does not offend your sensibilities.
What has shocked me through my entire experience, is how common this feeling is among families with a sick member. It doesn’t matter is the loved one is suffering from autism, cancer, or multiple sclerosis. It doesn’t matter if the family is headed by an engineer or psychiatrist while the partner has advanced degrees in education or nursing. It also doesn’t matter if the family is Hispanic, Black, or White.
The same feeling and the same response to stress exists.
It never ceases to amaze me that despite how superficially different we may seem based on education, color, or race when faced with a circumstance that is threatening to life or livelihood we all respond in similar manners.
People have said they can’t begin to understand what I am going through. Unless they’ve walked in my shoes, they just don’t get it.
I didn’t want to believe them. Are we really that different? Do we really have that many problems?
Yes, we do.
I thought if I could explain how I felt while I was feeling it, people would understand.
They don’t. I appreciate they try. That’s all anyone can do, is do the best with the information they have.
Our situation is sensitive. We’re a family that has been dealt one bad hand after another.
People want to see what it’s like. They want to try to understand, but it’s true, unless they’ve been in my shoes they don’t quite understand.
It’s a self protection mechanism.
Nobody really wants to believe, in their heart and soul, that my family could be theirs.
It’s too big a dose of reality. It’s a downer. It’s a scary place to be.

Tuesday, April 21, 2009

I have problems

I have a problem.
Well, I have many problems.
This one is special.
It’s not my dirty mouth.
I know some of you may argue that’s my biggest problem, but the picture to the right is from graft vs. host disease, a chronic, lifelong side effect of my transplant.
Yes, that’s my tongue.
It’s scarred.
I have problems.
I went to college in New York.
I was always fascinated with the inner city.
I wanted to understand it.
I didn’t understand it.
I grew up in NH in the country.
I wanted to understand a world as culturally different as possible from my sheltered “country estate.”
I decided that place existed, within driving distance from my family, in NY, Bronx and Uptown Manhattan specifically.
Really, use your imagination, how much different can you get?
The area where Youth Ministries for Peace and Justice (YMPJ) resides boasts the least amount of “green space” (aka trees or grass) than just about anywhere in the U.S.
It also boasts a shooting that occurred because the undercover police hired to patrol the area at night were so scared and anxious they assumed a man holding his wallet was holding a gun.
There are so many crimes in the area people are sometimes are assumed guilty until proven innocent.
To fit in, I adjusted my behavior.
I adopted an accent.
Looking like I do, speaking like I’m educated, talking like I’m all white, “prissy,” and country, just wasn’t going to help me understand.
I needed to assimilate, just a little.
My friends at college, they love me for me. They love that I’m country, that I didn’t understand their culture, but that I really wanted to.
I really wanted to know what was great about other cultures within the U.S.
I really wanted to know the obstacles they face in being successful and meeting their basic needs.
To do this, I decided to fit in.
I adopted an accent.
I call it New Yorican.
If I speak with this accent, I’m no longer “white,” “prissy,” or “country.”
I’m an uptown girl, assumed to be born and raised in the Bronx by Hispanic immigrants.
That’s all I do. I change my accent then the assumption of my whole life and background changes. I also change some body language. It’s simple.
I’d use the accent when I felt unsafe. I’d use it when I was tense and I wanted to fit in.
Now, I can’t get rid of it.
It’s a problem.
People don’t recognize the way I talk as an accent.
They see it as an attitude.
Yes, it is all attitude, but I have it because I adopted an accent.
I can’t get rid of it.
It comes out of my mouth when I’m tense or nervous, just like I trained myself to do.
I would use it triaging in the emergency department. Patients are more relaxed if they think you understand where they are coming from and who you are. I used it waking around the Bronx with The Visiting Nurse to talk to the groups of guys outside the projects.
I’d holler to them to get the door because I was going to take care of their moms.
Except, I didn’t say it like that.
So when I’m all ready nervous and stressed I get an out of control accent that makes me sound like I’m straight out of the ghetto.
The way I look and the way I am speaking do not belong together.
Then it gets worse.
When I get nervous, from all my treatment, my menopause, my gvhd, and now the steroids I’m taking, I get hot flashes.
This isn’t just being hot.
It is burning from the inside out.
First, I’m reacting to something that makes me nervous. I’m intimidated. I’m scared and feeling threatened for whatever reason.
Then, this terrible accent kicks in. One that I feel makes me sound silly, but tough. It makes me sound like I am uneducated with an attitude.
Lastly, just for fun, my body gets hot. I feel like I’m burning.
I start stripping off my clothes.
I can’t take it!
The heat is too much.
I start with fanning myself.
But then I start to sweat. I’ll take off a layer, my sweater or blazer.
That doesn’t work.
I dress in layers for this exact problem.
Sometimes, I forget that though I know I am wearing a tank top underneath my t-shirt or shell, the rest of the world doesn’t.
So when I’m nervous and talking in slang, I simultaneously decide my shirt needs to go.
To the outsider, I imagine it looks like I’m stripping, completely stripping, and soon I’ll be down to my bra.
I must look like I’ve lost my mind.
One time, I just wanted to try a shirt on. I had a tank top under my existing shirt. I told my friends I was trying a shirt on, then walking to a mirror in the store and stripped off my overshirt.
I’ve never seen my friends move so fast.
You’d think they were hustling and the cops were coming.
They scattered and tried to tell everybody in the store they had no idea who I was.
I’d lost my mind and decided to strip in the mall.
Thanks, Maggie and Laurette. I love you two too.
These are my problems.
I get nervous. I start speaking with an accent nobody recognizes so they think I’m getting mean. Then I get hot flashes and can’t control dropping clothing to make myself comfortable.
Then I look like a crazy woman.
Oops.

Monday, April 20, 2009

Bills, Bills, Bills

video

Oppressive Means. . .

Oppressive means, according to Merriam Webster, unreasonably burdensome or severe; overwhelming to the spirit or senses.
I’ve been looking for this word.
I forgot it existed.
I feel oppressed.
The current health care system in America is oppressive.
I try and try and try. I do the best I can. I’m still just treading water.
Then, when I’m down and out with pneumonia and need 6 weeks to recover, I’m flooded with bills. I’m flooded with phone calls and applications to again prove I am sick.
If I do not comply with the demands, I will lose my livelihood, even if the reason I can’t comply is that I can’t even roll over to answer the phone or I can’t breathe or stay awake long enough to meet their criteria to prove I’m sick.
My family is threatened with bankruptcy. We could lose our insurance. We could lose our home. We could have our income sanctioned and taken before we ever see it.
Then, how are we supposed to eat?
Then, how am I supposed to afford the medications I need to survive?
I feel unreasonably burdened.
I feel bullied.
I feel some of these occur on purpose to make it difficult to maintain the services I need.
I’m expensive. No insurance company is going to get a return on investment (ROI) on me. I am a very bad business investment.
Here is the latest in irritating oppressive bullying.
I received a phone call from a representative of my insurance company.
They asked if I would switch my antidepressant to one that was basically the same, very similar in structure.
I was sick. They woke me up in the middle of my nap. I wanted them off the phone and to stop bothering me when I was trying to get better.
I said sure, whatever.
Later that week, when I saw Melissa at Dana Farber, she informed me my insurance company wanted to change my lexapro to celexa.
WHAT?! These are not the same. They are both in the same family (SSRIs) of antidepressants, but they are definitely not the same in structure.
Each medication is different in structure. Each has their own potential rare side effects.
The insurance company had tricked me, even with all my education, because they asked me when I was too sick and tired to fight!
I know these drugs are not the same, I used to take Zoloft, which is in the same SSRI family.
It gave me heart burn so severe I couldn’t eat. I would lay by the toilet and force myself to throw up to relieve the pressure.
It had a severe, nasty, painful interaction with my cancer.
I’m not taking the risk that could happen because some insurance company has a deal to get celexa cheaper than lexapro.
But the damage has been done.
My insurance company wants me to change.
When I went to the pharmacy to fill my prescription, my co-pay for the lexapro was $50!
I usually pay $10.
If I refuse to comply with the insurance company’s demands, they make the medication unaffordable.
That certainly “overwhelms my spirit and senses.” Actually, it entirely offends my sensibilities.
I don’t think anybody reading this is going to debate I need anti-depressants.
I, personally, think everyone with a diagnosis of cancer should receive them immediately as a standard of care.
However, I have spent 2.5 million in health care costs to survive and I still have to fight over which antidepressant to take!
Can’t I suffer in peace?
Is this some sick joke? Is this one of those “misery loves company” examples.
These hassles are certainly making me irritable.
What I also despise is that the people delivering the bad news, the Doctors, Nurse Practitioners, the technicians at the pharmacy that have to notify me the insurance jacked up the price, so often get the wrath.
Don’t kill the messengers, but who else can you blame? Especially, if you are too sick to simultaneously fight your disease and feed your children.
There is also the threat that if someone makes too many complaints the insurance company can stop services. You can be dropped as a patient.
I’m at least to the point where I dare them to. They can go ahead.
I would throw a bigger public hissy fit (or Hillary fit) than I am throwing right now.
Here is the basic message I am receiving: comply with our demands, our paperwork, our changes in your medication, or else we will make your treatment unaffordable, we will drop you as a patient completely, you will lose your monthly disability check, your medical bills will be too high to pay, then we will place a lien on your home and everything else you own and threaten to take that so you can have cancer, be homeless, and chose between healthcare or starving.
It’s your choice.
I don’t really feel like I have much of a choice. My house, food, an income, healthcare, those are all needs.
They are protected under my civil rights. I have the right to live.
It’s being interfered with and I don’t like it.
I feel oppressed.

Sunday, April 19, 2009

Reckless Googling

I googled a woman I received an email from a couple months back. Now I’m wishing I hadn’t.
She seemed well schooled. Her opinion and supporting facts were valid.
I wanted to see who this stranger was asking me questions
The woman is a MSW, LCSW from Portland, Oregon.
Her particular interests and realm of study focuses on death with dignity, assisted suicide, and the terminally ill.
My first reaction was, “What the hell is she doing contacting me?!”
Then I remembered, oh yes, many people think I will die.
The whole process of treatment, if they were added up like numbers into an equation, would equal that I am undergoing the dying process, and not the kind that we all start at birth, the kind with a very finite end and cause.
This thought is the elephant in the room. It is something that has probably crossed the mind of every person who has heard of me.
Is she going to die?
The answer: YES.
Sometime, eventually, I am going to die. I’m not too worried about that end all be all.
I am worried about the process.
I didn’t realize it could take so long.
I’m familiar with John Bowlbey’s “Stages of Grief.”
If you are not, he has four: (1) shock and numbness, (2) yearning and searching, (3) disorientation and disorganization, and (4) resolution and reorganization.
The four dimensions do not follow a set order and a person may experience feelings from several stages at one time.
Writings of Kubler-Ross, Engel, and Bowlby & Parkes address the grief process as reaching a resolution or end point. Those of us who have these ailments maybe lucky.
Some, including the parents of a child with a congenital anomaly or a person with an adult onset genetic condition (e.g., Huntington disease), do not always know when the end will occur. This causes prolonged grief, first described as "chronic sorrow," which has traditionally been used to describe the recurrence of the feelings associated with the grieving process by parents who have children with special needs.
This model was expanded and cyclical grieving was added to describe the cyclical nature of the recurrence of the emotions associated with the grieving process. This opposes the first idea of always feeling sad.
Chronic sorrow does not describe me, but I do move in and out of the "grief loop."
Cyclical grieving is said to occur frequently or may hardly occur at all, bt what’s agreed upon if that, generally, when these feelings of grief return, they are shorter in duration and less intense than the initial grief reactions. ttp://www.usd.edu/med/som/genetics/curriculum/4DGRIEF4.htm
WRONG.
Elisabeth Kubler-Ross, a swiss born psychiatrist who promoted hospice in the US in the 1950s states there are 5 stages of loss: Denial, Anger, Bargaining and Acceptance.
I learned about these theorists in high school psychology 101. I became familiar with them throughout nursing school. Let’s call them the “Death Doctors.” They are the alpha resources for death.
Well, at least they are to students.
As a patient, I agree with Kubler-Ross’s stages. I also do think grieving can be cyclical and jump through stages.
I do not agree with the idea that feelings of grief become less intense and shorter in duration.
Feelings are not like medications, you do not get a tolerance. The things, events, or people a person grieves for changes within the process making each incidence of sorrow unique.
Sometimes, I also grieve more with each loss.
Each therapy that does not work, each scan that is positive, every side effect of treatment serves the purpose of evidence that I will die.
More evidence does get me closer to a final resolve, but it all serves as reopening a very raw, deep wound that was really just healed on the surface.
On good days, I wonder what the step is after acceptance.
In the 1950s, the dying process occurred relatively quickly. A diagnosis of cancer meant one of two things: you would either be cured or you would die.
Medicine and disease have changed greatly in the past half century. I don’t believe any of the aforementioned theorists had any idea that the dying process could last for a decade from diagnosis to end.
I’m sure they couldn’t have anticipated a drug like “Gleevac” and the theory of cancer without disease.
There is no step in the grieving process for this living limbo.
I think there are now six steps to grief in the dying process.
I side with Kubler-Ross’s first 5 steps. Grief should be explained in simple, concise terms, not only to the actively dying, but to all to appreciate the fear and regression that may occur within a person.
The verbosity of Bowlby deducts from the rawness of emotions most people feel about their end. Death should be explained simply. It is simple.
The sixth step is transcendence.
At least it is for me.
Acceptance is knowing you are going to die and being okay with it.
Transcendence is not the same. Transcendence goes beyond accepting.
This idea of transcendence is accepted in different terms but similar ideology in most religions.
Buddhists transcend to Nirvana. Mary ascended to heaven.
Transcendence during the dying process of those of us that are not the Virgin Mary or Buddha is inner peace.
I’m glad I found it.

Saturday, April 18, 2009

You can take tha girl out tha hood. . . .


Silly me, silly me. My bad.
Thank you those who commented to let me know you are reading.
I have been going through a period of questioning whether my transparency is worth some of the personal problems it has caused.
I’ve been grappling with if being open and honest about my disease process and our families’ coping is worth some of the public backlash and repercussions.
When I started writing, I knew there would be opinions regarding me, my behaviors, and view of the world.
I was absolutely ready to accept this to allow people insight into how it feels to suffer from cancer, especially as a young mother and woman who is highly educated in health care.
I thought I could give a perspective and information for free that many may not otherwise afford.
I wanted to lessen the information asymmetry between provider and patient so patients would not have such a strong, paralyzing fear of treatment and the unknown.
What I did not foresee, is that people would feel free to comment and say hurtful things not only about me, but my entire family, including Alexis and Xander.
This is not something I am willing to accept, even though they both love and swear I’m a celebrity, I do not want to put children in a position to be hurt from my decisions.
However, the kids are a huge part of my life.
I can’t write, be open, honest, and transparent without talking about how cancer is affecting my entire family and everyone around me.
So what was I supposed to do with all these questions?
I finally figured it out.
I’m not going to stop writing. I’m also not going to continue writing but only publishing my weakest thoughts.
I’ve been holding back. I had decided that if my thoughts are going to be trouble, I should at least hide some and get paid later through book sales. At least this would ensure the long term care of the children.
It’s taken a while, but I’ve decided, despite what a few people say, I am comfortable with how I live my life. I am a good, loving mother and aunt that is doing the best I can with our difficult situation.
Actually, for all you who may be hating out there, I doing damn well.
I have more experience with health issues and childhood development than most. What I do is based on rationales supported by scientific evidence. You can all say what you will, but I am comfortable with my actions.
I live my life in accordance with my values. I sleep well at night.
However, I am a she-bear when it comes to the children.
I was once told “You can take a girl out of the hood but you can’t take the hood out of the girl” or, let me write it with the Puerto Rican, Jackson Heights accent he had, "Ya can take the gurl out tha 'hood, but ya can't take tha 'hood out tha gurl."
I didn’t believe it. I’m a country girl. I vacationed, freelanced, researched the projects. I wasn’t really in it.
I’ve come to find the man who said this was right. I want to make this clear. Feel free to say what you want about me, but don’t you dare involve the kids.
I’m going to keep writing. I’m going to go back to allowing myself to feel the strong rare emotions that make any writing powerful and great so you can all understand the experience we, as a family, are having.

Lifeline

“You have a son?” The mother of an 18 year old transplant survivor asks me.
“Yes, he’s five” I tell her, smiling and glowing only the way a mother could.
“Well, at least you have something to always hold onto.” She says in reply, looking at her daughter who was too young prior to her diagnosis to have children of her own.
K did take the proper steps to protect her fertility. She froze her eggs so they could be kept safe and implanted later after she has been cured, when she finds the right partner.
Now, however, as she is going through her treatments, as she is struggling to remind herself that the world is a good place that must be held onto to survive, she does not have that something, be it a child, a lover, a best friend, or a dream, that binds her here.
The original baldy wrote, prior to his end, and after the break up of his engagement that: Poppy was the bit of hope I had built my crumbling existence on.
I promised myself that if I survived my bone marrow transplant I would propose to her. Thinking of how much fun our wedding would be was one of the main focal points I used to survive.
She also said she was happy to sign up to IVF treatment and that if I did die it would be great having a child that reminded her of me.
Just by saying that helped me more than she will ever know………..
I think I have really made the best of the hand I have been dealt but now I can genuinely see no way out. (http://baldyblog.freshblogs.co.uk/2008/04/heart-break.html).

Do you see the theme among the three of us who are facing cancer in our late teens and twenties? I’m sure the need for something worldly to grasp onto is broader than our age ranges and disease types. I dare say anybody that has ever been faced with the distinct possibility of death understands that the outside world shrinks, slowly, as you become more and more ill.
Prior to diagnosis, you are as you are, playing games, working full time, cooking, going to movies, concerts, reading and doing everything you enjoy.
Virtually overnight with a diagnosis, you choose to leave those that mean the least to you to focus on what is most important. In my instance, I left work quickly. I pulled Xander from day care and we traveled every weekend to different areas: Boston to the children’s Museum and Aquarium, New York to see Yanellie and her two young sons, or just lounging at a friend’s homes whom we hadn’t seen in a while but missed. I chose to relish what may be the last freedom and autonomy I could have with my son prior to starting chemotherapy.
When chemotherapy started my focus became even smaller, my family, loved ones, and supporters existed, but I was no longer able to extend energy to maintain or begin friendships. I allowed this pastime to roll by the wayside.
Some days I could only lie in bed, leaving for food I needed and my medications. During those periods I would stare at the ceiling and imagine my life after the period was over. I’d wonder how strong I would become due to my trials and what I would do with the experience. I’d imagine Xander growing up and what accomplishments I would be able to see.
When I became desperately ill to the point I could no longer breathe, my system was failing, and the doctor’s had told my family I was going to die, I focused on my child. He was my one link to life. He was the lifeline I was grabbing onto. I told myself I had “unfinished work” and I needed to serve “my purpose” prior to death.
I woke up to cope with the side effects from the tragedy and slowly regained my strength.
I was able to do this because in my darkest hour I was focusing on the love I had on earth and how I would be able to return that love if given a chance.
Any other thought may have caused that line to fray and snap. If I had focused on loss or sorrow or pain I certainly would have left the world entirely. I chose not to. I held onto the good thoughts in my mind more tightly than I have ever held anything to my heart.
I’ve heard similar stories from many of us who have faced serious illness. For Baldy, it was the picture of his future wedding, the lasting love he would have, and his future children. When that was lost he eventually succumbed to his disease. He’d lost his link to life. He’d given up faith that the world had anything great to offer him.
I understand the fear the mother has about her teenage daughter. She wants her to have the one thing she needs to want to fight to the death for. She fears she does not have it. I’m sure she does or she would not have made it as far as she has.
I believe most people in our position harbor this one thing within them, whether it be a child, a friend, a loved one, a family member, a PET, a job, or a dream. It is what means most to us in this entire world which gives it the unique capacity to hold us here, fighting, long after we ourselves have decided the pain is too much. That one thing reminds us that there may be more great things out there in the world to find, coming to us, and keeps us grasping and fighting to find it.

Thursday, April 16, 2009

Taking the Power Back


I hope you’re all still listening.
Where have all my commenters gone?
Just because I’m in cancer limbo, AGAIN, waiting for months, AGAIN, to figure out a plan of treatment action does not mean I’ve stopped with my goals to educate everybody who will listen about the struggles of cancer life.
Now, you don’t want to miss out on that do you?
I have been busy and missing some writing days, but now I’m back.
I’m feeling liberated. I’m feeling empowered.
My advocacy work has done for me what therapists, medications, and lots of loved friends, family, and fans have had difficulty doing.
I don’t feel powerless anymore.
I feel strong.
I can do my best to control my cancer. I can take my medications religiously. I can eat a special diet. I can surround myself with loving, funny, energetic people, but I still feel helpless.
I still feel my body has been taken away from me. That is a sense of loss no human should ever suffer.
However, I can control what I do with my experience.
I can make my disease purposeful.
I spoke to the NH Senate Finance Committee last evening on behalf of myself with the support of The American Cancer Society.
I asked that the state raise the cigarette tax to fund The Cancer Plan, which is a cancer prevention initiative within the state. You can see the speech below. I also suggested that any money obtained in this manner be used for epidemiological research.
We’ll see how successful I was.
I do know hospitals are receiving 2 million in stimulus money. NH has also received money to review possible solutions for healthcare reform.
My patients as partners idea is a very simple, cost effective idea that would be easy to use diffusely, not only across the state, but across all the states.
The simple act of transparency has lowered costs before.
A study published in 2002 entitled “What happened to term life rates? In the Journal of Political Economy determined the cause was transparency in the purchasing process stemming from online comparison sites (“What Happened to Term-Life Rates?” See Jeffrey R. Brown and Austan Goolsbee, “Does Internet Make Markets More Competitive? Evidence from the Life Insurance Industry,” Journal of Political Economy 110, no. 3 (June 2002), pp.481-507)
Suddenly the difficult task of understanding which plan meets a person’s needs for the least amount of money was made easy. Competitors were forced to lower their prices to remain in business. The barrier of understanding the language and process of purchasing insurance was removed. The expert/consumer gap was narrowed
Consumers could now buy insurance, and make educated decisions regarding their needs efficiently.
This simple action put 1 billion dollars into American consumer’s pockets.
Can you imagine what transparency combined with streamlining procedures could do to ensure the most efficient, quality care can be administered?
I think it could revolutionize healthcare.

Speech to The Senate Finance Committee

Hello Chairman D’Allesandro and Members of the Senate Finance Committee
My name is Hillary St.Pierre and I am speaking on behalf of The American Cancer Society in support of raising the states’ cigarette tax.
I am here speaking today because I have received three years of chemotherapy and radiation and two stem cell transplants to fight my Hodgkin’s lymphoma. Despite my long battle, I have not been cured and will likely resume treatment in June.
Cancer is one of America’s greatest killers. Based on the latest data, American Cancer Society epidemiologists predict that approximately 7,030 NH residents will be diagnosed with cancer and 2,640 will die from the disease in 2009.
If today is an average day, seven people will die of cancer in New Hampshire alone.
Cancer kills indiscriminately with no regard to race, age, sex, socioeconomic status, and heritage. Cancer is an equal opportunity killer.
It has chosen to try to kill me.
If the word cancer was replaced with serial killer, the media would be alerted. There would be a great public uprising and demands for every possible means of finding this killer and bringing them to justice regardless of cost. Local police departments, as well as the FBI, would be called in.
The Federal Bureau of Justice homicide data shows homicide kills far fewer victims than cancer. (http://www.fbi.gov/ucr/cius_04/offenses_reported/violent_crime/murder.html)
It is clear the mass murderer we should fear is cancer.
However, because cancer is a disease and not an individual, cancer is not receiving the funding needed to combat its mass killings.
Studies prove every time a state significantly increases its cigarette tax, rates of smoking decrease. From a health standpoint, a decrease in smoking will lessen the possibility of future lung, throat, or oral cancer.
Second hand smoke has been linked to recurrent ear infections in children as well as increased asthma.
A decrease in smoking from an increase in taxes may ease recurrent childhood ear infections, which cause speech delays requiring therapy that is provided through the school system using taxpayer’s money to correct.
The money from a tax on cigarettes could then be used to fund cancer prevention, epidemiological research , and studies to reform health care making the system as efficient and cost effective as possible to fight disease.
NH will need all the money possible to combat cancer. A January 27, 2009 article in Businessweek entitled “Soaring Cancer Drugs May Cripple Medicare” states “Medicare spending on drugs administered in a doctor's office, the vast majority of which are cancer treatments, rose from $3 billion in 1997 to $11 billion in 2004, a 267% increase. Overall Medicare spending rose by only 47% over the same period.”
Studies show the magnitude of the cost increase for each new drug for colon cancer exceeded the magnitude of improvement in efficacy. Fifteen years ago, Bristol-Myers' (BMY) Taxol was the only commonly used cancer drug that cost more than $2,500 per month. Today, Genentech's (DNA) Avastin, Eli Lilly's (LLY) Erbitux, and Novartis' (NVS) Gleevec, all widely used, can cost $10,000 per month and up (http://www.businessweek.com/technology/content/jan2009/tc20090127_588803.htm?campaign_id=rss_daily).
In summary, we are paying more but we are not getting better results. Eventually, we will have the same amount of cancer patients using an astronomical proportion of medicare costs. There will need to be a way to fund this disparity. Raising the cigarette tax is a wise step.
Cancer has chosen to attack me. Despite my long fight and bad odds, I have hope I will survive. However, I do not want any other young mother, wife, or career woman to endure what I have had to.
In the future, cancer may choose you, your spouse, child, parent, or loved one. Cancer is a disease that will invade 1 in 3 females and 1 in 2 males. It will likely affect each and every one of us here today through diagnosis or association in our lives.
Through raising the cigarette tax we are taking a strong preemptive strike to save those we love from being faced with the expensive mass killer that is cancer.

Tuesday, April 14, 2009

Andyson

This comment is for Andyson. He comments frequently and writes his own blog about his experiences with cancer. He is also a Bostonian Cancer Blogger. Dana Farber has quite the talkative crew.
Click on the picture on the B symbol to get to his page.
Andyson, I think we'd all like to know if your hair grows in differently if you shave it off.
I know, my hair is kind of driving me crazy.
When I wake up in the morning, it's either stiking straight up or both sides have portions that stick out.
It looks like my head has grown wings and is trying to fly away.
I think I can speak for the female survivors when I say, please shave your head and let us know if it helps.
But first, of course, check with your fiancee to make sure it is wedding appropriate.

Extreme Makeover NH!


Extreme Makeover Home Edition wants to come to NH!

I've been thinking about contacting them for a while.

On Sunday, I watch their show in bed and think, "I'm just as sick and sad as these people. I definately try to contribute. I could definately be on this show."

Except, have you seen my house?

It's great.

However, I do want a place for Xander, Alexis, and all other children that may need some extra TLC to go during times of family hardship.

Good news is, my family does have a property that could serve as a camp.

TRAIL (trail4kids.org) has really done a wonderful job helping Xander communicate along with many other children in NH; however, TRAIL does not have a place of their own.

They need one.

A place should exist where children, like Xander and Alexis, can go to escape stress within a family due to life circumstances. A place should exist that invites all children that are coping with problems within their family to escape.

Maybe, parents like us could get some respite too.

If you think this idea and our communities' children are worth it, please submit an application to http://a.abc.com/media/primetime/xtremehome/apply/2008_APPLICATION.pdf?v1

The Princess & The Pea

I’m sick.
I have cancer.
I PET scans are pretty definitive.
I like the idea that my immune system, Simone, could overcome the cancer.
We’ll give her some time to work her magic.
I know I have cancer.
I can’t remember how many times I’ve relapsed.
There is a clear pattern of symptoms that accompany my relapses.
I get fevers at night. My muscle ache. I crawl into bed cranky, aching, and chilling.
The fevers in the evenings are about 99.7-99-9.
If I start having evening fevers with muscle aches and minor chills, my cancer is acting up.
I think, if I were inhuman and didn’t have crazy things like psychological defense mechanisms, I could predict my relapses to the day.
What’s cooler than this from a treatment perspective is, I think my intuition can be replicated.
Patients know their bodies. Their ability to understand themselves can be honed.
I joke I have “radiological” or “Diagnostic” fingertips.
I’ll find a node smaller than a pea.
My first hematologist nicknamed me “The Princess and the Pea.”
If there was a node acting up, I would find it.
Most the time, my providers could only find the node upon my direction.
These are people that use their hands to feel cancer day in and day out, but I live in my body 24/7.
I have the benefit of knowing when something changes. I have the benefit of knowing when a minor feeling is out of place that I am compensating for exteriorly, but can’t explain interiorly.
People used to think this was paranoia.
You’re not paranoid if your body is really out to get you.
I started complaining about three weeks prior to my PET scan about enlarged nodes in my armpits.
I had a large, soft, moveable node that was easy to find and touch.
This didn’t worry me so much, but just above this, along my lymphatic chain, was a very small node, smaller than a pencil eraser.
This node was hard. It felt like a pebble. It was also deep within the tissue.
I didn’t like it. It told my providers, they couldn’t find it.
I told all my providers actually, at least 5 professionals: 2 hematology specialists, a nurse practitioner, a fellow, and a resident with a desire to specialize in hematology.
None could feel the damn nodes I was so concerned about.
When my PET scan was read, there were auxiallary (armpit) nodes that “lit up.”
You don’t want to light up on a PET scan. If you do, it could indicate cancer.
It could also indicate a virus or normal lymphatic activity.
I was told everybody could have some reactivity in these nodes.
Well, if everybody has reactivity, then why weren’t these reactive before, in say, the past three years and 20 PET scans I have had previously?
How about that evidence?
The best predictor of future behavior is past behavior.
Based on past behavior, My body is acting up. It is misbehaving.
Ironically, in Spontaneous Healing, by Andrew Weil, there is a case study on a man with lymphoma that presents EXACTLY like mine.
It begins with a viral like infection that inflames all the nodes. I had this infection in July 2005. It causes lethargy and muscle aches.
After the illness resides, some nodes remain enlarged, but soft.
Over time these nodes harden and become more fixed.
The book this man is featured in is called SPONTANEOUS HEALING.
Guess what happened to him.
It was healed through some simple lifestyle changes.
I believe there is a cure to my disease. If not a cure, there is a way to manage it so my cancer does not cause disease.
I know it exists. I know I’ll find it.

Monday, April 13, 2009

EASTER PICTURES!











Emerging Health Information Technology


Colette, a close college friend and current Bronx Visiting Nurse Association Registered Nurse, and I were talking recently about collaboration between different hospitals for better patient care outcomes.
Yes, this is what I talk about with my nurse friends. This is what I think about in my spare time, lying in bed, between episodes of Bones and House.
You would be amazed how amusing these conversations can be when peppered with stories of our experiences.
This idea sounds simple. It may sound like common sense to have hospitals that frequently share patients also share their patient records and information, but let us tell you, you would think we were suggesting learning Chinese and changing the national language.
In theory, transparency in health care could bring about ease of transition between hospitals and specialists. It could prevent “medical accidents” like administering a medication to a patient with a known allergy. It could provide continuity of care when a surgery is done at one hospital and the patient goes to a different hospital for a post-surgical infection.
However, in reality and in practice, hospitals have trouble communicating between departments.
They function like the CIA and the FBI prior to 9/11, one hand does not know what the other is doing, even though they may be separated by one pair of double doors and 20 ft., they are not having conversations about patients unless there is an admission.
Even then they talk as little as possible.
Frequently, there is competition between departments.
Competition is good. It keeps people on their toes, it keeps people searching for the best treatments for the best outcomes.
Animosity is not so good, and sometimes a little healthy competition crosses the line.
I’ve seen gang fights less aggressive than departmental territory battles. Just ask an ICU and an ER nurse which one is better.
If I had to pick, the ER’s get red and the ICU’s get blue. Start wearing your bandanas.
How, ever, could this hospital patient sharing idea going to work?
It will. Good news, it’s starting.
Montefiore Medical Center and St. Barnabas Hospital, both residing in Bronx, NY, now have the ability to electronically share patient files. They used Emerging Health Technology (http://www.emerginghealthit.com/) to accomplish this monumental task of communicating with a separate hospital within the same care network less than a mile away.
Dana Farber and Dartmouth Medical have a different, less refined, manner of staying in touch, as does Mass. Eye and Ear with Dana Farber. Email addresses can be added into the electronic medical record system. Each time the medical record is updated, an email is automatically sent to the addresses of the providers that have been requested.
However, once in the physician’s inbox, it’s up to the individual to decide where it goes.
The file does not get automatically sent into an electronic medical record system.
It gets deleted.
I can’t even handle the amount of emails I receive. I’m pretty confidant these all-star doctors can’t either.
There is also another problem. The problem I see in each hospital creating their own intranet is that the intranet is not necessarily compatible with, say, anyone else.
Patients often frequent multiple hospitals, but even within a small rural area with a minimal population, communication among providers is nil.
All it is going to take is one state where the hospitals are willing to work together for a common goal of better patient outcomes, more efficient practice, and more cost effective procedures to start a national trend.
Obama is voting VT as this state and throwing stimulus money their way to improve their all ready started electronic communication systems.
I think while VT is publicly toying with this idea, NH is going to come up with big ideas.
New England is where it’s at for emerging health IT.
It’s the modern day silicon valley. There are lots of big ideas and great minds ready and willing to improve our system.
Honestly, I think a higher power may have picked up all the over-achievers, type A personalities and dropped them in New England. Specifically, most of the reside in Boston.
Trust me, I can spot over perfectionist over-achievers. It takes one to know one.
At least we have the brains to accomplish goals, what we need now is unity.

Sunday, April 12, 2009

Life is Good Survival Tips

Take bubble baths
Scream for what you believe



Laugh & Love

KISS


Indulge in Retail Therapy



RELAX


DANCE


Enjoy Nature


PLAY

Have a Happy Holiday



















Saturday, April 11, 2009

Pre-Easter Celebration

I knew it was going to be a good day when I woke up to two children squeling, “Did the Easter Bunny come? Where are the eggs? Did he hide the eggs and bring us baskets. …. With. . .. with . … CANDY! Wake up mom!”
They’re a day too early, but apparently, Easter is a big deal this year.
If you’re wondering where the second child has come from, we have Lexi for the weekend. She’s our niece. She’s been an active part of our family since Jon and I started dating when she was six months old. We take her to sports. We take her on vacations, and do our best to make sure she has all the opportunities Xander does.
We’ve missed her, but we had too many problems of our own to enjoy her on the weekends. Now, we have her back for Easter. It’s a special occasion.
There was some question today of whether or not the Easter Bunny was going to skip our house.
Jon decided to swing by Blockbuster as we were leaving “Hannah Montanna” and pick up a movie. He chose “Religulosity.”
He checked the cover. It looked funny.
He failed to realize that it was funny by picking on organized religion. He had decided to rent a movie making fun of religion on Easter weekend.
I couldn’t let that one go.
“Jon, what did you get?”
“It’s supposed to be funny, it looked funny.”
“Who told you this would be funny? It doesn’t look all that funny. Do you even know what it’s about?”
“It looked funny.” He said again.
“You rented a movie picking on religion over the Easter weekend. I don’t think that is going to make God very happy. It’s kind of blasphemy. Do you think Jesus would think this was funny?” I poked at him, playfully.
What I didn’t take into account in my joking was that there were two children listening to our conversation.
Out of the back seat I hear Alexis say, “You rented a movie that picks on Easter?”
“The Easter Bunny is going to skip over us.” Lexi accused.
Then, out of his Miley induced nap, we hear Xander chime in, “You offended the Easter Bunny?!”
Xander opens a sly eye to look at his father, “What if the Easter Bunny sees THAT?” he asks. “We should bring it back.”
Jon is officially surrounded and our point has been made. Movies picking on religion are not okay when we’re celebrating.
As far as Hannah Montana, it is definitely a father/daughter or uncle/niece bonding movie.
Lexi wants to buy it immediately.
Xander and I fell asleep during the show.
I have a problem falling asleep during movies. I have a problem falling asleep at Broadway plays too.
I like to go. I like to pretend to be cultured and upper class, but apparently theatre is not for me, since I’ve fallen asleep at Aida, Mary Poppins, Les Miserables, and RENT, twice.
Oops. The trend extends to movies also. If I ever need a nap, I just pop in a movie. It’s guaranteed to make me sleep.
I had hoped the weather would cooperate, and prior to Hannah Montana time, I could talk Lexi and Xander into some serious gardening.
They’re old enough to respond to incentive, such as payment. We have a lot of flower beds.
The weather didn’t cooperate though and instead decided to curse me with pain and diffuse muscle aches no matter how much I walked, danced, or stretched. I feel chilled to the bone with no hope of warmth. I ache all over. My eyes feel gritty and gross. My lips are chapped and taught permanently from GVHD.
Sometimes, when I swallow, I feel a stabbing in my throat. This is my dry, nonfunctioning salivary gland. It’s reminding me by painfully stopping my eating in its tracts that it’s dry.
I use eye drops for my eyes and incessant blistex to ease the pain of my lips.
I call myself “hot lips” to joke about the burning. Maybe if I find it funny, it won’t be so bad. Maybe if I can joke enough I can cope with the terrible things that are happening to my body.
Hopefully, eventually, I’m going to have to find some avenue to cope with these new onset chronic symptoms since they are life long.
I’m suffering, but I’m still trying to enjoy myself. I keep remembering Easter and the message that was meant to be sent to the world.
I think I get it.
Happy Holiday,