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, June 30, 2009

Casa de L'Amaya

When I was in high school I had a slight fear of commiting to go toother people's houses.
Call me paranoid.
Call me weird.
I know it's a little unorthodox for a teen to worry about things like this, but I was worried I would say I would go somewhere only to find that it was ..... Gasp..... DIRTY.
Too dirty. Below my cleanliness standards dirty.
I didn't want to be forced into a smoker's home that smelled like cats with a dirty friend because that was where my new found friend lived.
The friendship was just not worth it.
I would stay home, being a hermit, and not make plans that required home visits.
I guess this quirk prepared me for my future isolation and disease.
The paranoia of other people's homes has only gotten worse.
I hate walking into a house only to find there is construction going on, cabinets have just been removed, there are five dogs, etc. Etc. Etc.
Not a problem this week, x has finally agreed that we are staying in a house, but only after we named C and C's house, casa de l'amaya (amaya is their last name), a very vogue, clean, b and b.
We spent yesterday lounging in our swimsuits, playing in the pool.
I experienced my first game of LIFE, which I somehow missed out on as a child even though I was never wanting for board games.
We had a scrabble game too, which I had never played.
I hate learning games now. I am getting too ultra competitive, but these were fun.
Did you know a "turk" is not just a person from turkey, but is also "one who aids and advocates?"
I know you thought this defination described a "hillary," but it doesn't.
Just ask the scrabble dictionary.
Board games are absolutely coming camping with us (our next trip, the annual campingg excursion in the white mts with the wilder side of the family on july 5-17).
After our leisurely day, a nice couple from c and c's church let us borrow their lake house on easy st. Yes, we were allowed to borrow a lake house, an absolutely gorgeous one where we could fish, swim, and bbq to our hearts desire. It was absolutely gorgeous on lake jordan.
X and jake had some bonding time. Jake taught him some fishing moves and jumped into the "slimy water."
It was a great time that
ended with me having my first road trip on a motorcycle, a harley no less (I'm not counting the ride in the side car, F).
Doc has drilled an "anti-bike" mentality into me since birth: bikers are organ donors, its a unnecessary risk to your life, and really, how many ER nurses and docs do you see riding those?
I figured I took enough risks with my life and it was time to feel the freedom.
I did still clutch the seat for my life though.
Old fears die hard, but it was well worth the risk.

Monday, June 29, 2009

Promising News

There still are more experiences awaiting us down here.
Last night, c and c took us to the bass pro shop where there were all sorts of activities of xander (and the sports enthusiast in all of us).
Upon walking in and seeing all those confederate flags hanging, x again decided that they were his "x" flag and screamed "yay! It's my flag!" And pointed.
I haven't given him the whole history lesson mostly since I am not sure how to approuch it.
For most my life I didn't realize that history is told differently between the north and the south. I was amazed when I found out, for sure with evidence, that this was true. I don't really know the southern side of things.
I am also still a little suspicious that two stories could exist. I'll have to investigate.
I do know we had lots of fun at the bass pro shop. There was a casting area where x could work in his skills and try to hit the "large mouth trout" which were really pictures of fish with buckets as mouths.

Then there was a free laser shooting gallery, but the guns were too heavy for x.
He wasn't really feeling the keychain I desperately wanted him to sit down and make. I guess it didn't take enough boy energy.
Having x is a really good excuse to do fun things that would otherwise not be so appropriate for a group of adults.
We went to the shakespearean park and montgomery's museum of fine arts, which has a great kid's section.
I think brynn and colleen were having as much fun mother-daughter bonding as x and I did. We did an artwork project with ripped paper and pastels. Brynn's inner artist came out with a landscape showing an itty bitty stick fisherman.
We thought that might be the highlight, but they had mac computers where you could take a webcam picture then decorate it as you pleased.
Colleen and brynn experienced some serious giggles over this one and we soon became the "booger bunch" with colleen as queen.
I did try more localfare in my attempt to "eat my way through the south" at islamoradas where we all tried "alligator nuggets" including xander.
I have to say they weren't my favorite but now I can at least say I ate alligator.
Absolutely worth the experience, and I do think a trip to savannah to see carol should be in the works, maybe for next spring.

There is promising news on the health front, a recent "moss report" written and published by Dr. Ralph moss, an oncologist who was previously employed at america's alpha and omega cancer center, sloan and kettering, but left to start hos own manhattan based practice using the world's finest complementary care methods declared the efficacy of hyperthermic treatments.

Hyperthermia is the possible treatment I will undergo in the fall in Germany.
I am not personnally familiar with dr.moss; however, he did come highly recommended from a professional I highly recommend.
I haven't retained his services since the fee sticker shock of $300 for an online consult was a little too much to swallow. Then when I did get to the point where I decided reviewing his services may be worthwhile, his scheduling secretary said I would have to buy additional information prior to speaking with him for an additional $300.
That just didn't sit well, but I will take what he will give for free (you should too) sign on to his site and receive weekly moss reports.
This is where I learned that a usc study showed I had unwittingly canceled out my velcade treatments by consuming green tea.
The study said three or more glasses of green tea daily would likely cease the mechanism of action in velcade.
That was just about what I was drinking daily during my infusions. How ironic, I didn't trust, didn't want, that velcade anyway, and I undid any good it could have done unknowingly by imbibing a tea that's anti-cancer properties function in the same manner as the drug itself.
Usc had probably hypothesized that drinking green tea with velcade could send levels through the roof and incite side effects by potentiating each other, but no, the opoosite is true.
Tea and velcade cancel (or cancer) each other out.
Good news is, A recent report states that hyperthermic treatments have been used with great success in germany among woman with advanced cervical cancer effecting the lymphnodes.
The addition of hyperthermic treatment doubled the 12 year survival rate (so dare I say cure rates?) Among this study group.
Why is this good news for me? This will probably be my next line of treatment if push comes to shove and I head to germany.
This is the treatment dr ursula jacob, who was also previously farrah fawcettes doctor, recommended after reviewing my extensive history.
Hyperthermic treatments can be localized with minimal effect to surrounding tissue though I am sure blood counts will be altered. I hear this treatment may be available in the us, but in few centers. It is available in germany and has been embraced by the klinik Im alpenpark and among the german orthodox cancer society despite being relatively new technology.
Good news. Good to know I'm headed in the right direction. Now if I can only escape financial catastrophe and emotional break down until I make it there.
One person's reaction to Jon's statement that I may be headed to Germany pending test results to see "The same doctor Farrah Fawcette sees" certainly didn't help our peace of mind.
The person looked at him, quizzically, and told Jon, matter-of-factly, "you know she (Farrah Fawcette, not me) is dying don't you?"
Just in case you needed some tips on manners and ettiquette, social savior-faire dictates that you should NOT respond like this.
I am deeply saddened by her recent death, and more so irritated that "The King of Pop" had to die on the same day and outdo her media coverage. This day also happened to be "Nationally health care day" with rallies and meetings in Washington DC. Those events were also overshadowed by Micheal's death.

On the political side,I have received some very positive communication with employees and representatives of the state of nh regarding my patients as partners idea.
The goal is to have the site framework set so I can log in and be up and running as a trial patient before leaving for germany.
I am cautiously optimistic about this endeavor.
Everytime I receive an email or any communication I wonder if this is really happening, if I am really being taken seriously, and if this vision can and will be implemented.
I'm getting closer to allowing professionals all over to share my vital health information, to weigh in freely on best practices and hopefully expedite communication for ease of access. I am excited, but I am keeping it ion the inside.
I know farrah fawcette, God bless and rest her soul, would have loved this vision.
Her endeavors, I assume, came of the same motivation as mine: to normalize, if not glamorize in hopes of gaining attention, cancer. Ms. Fawcette did far more than make it okay to say "anal" on tv without a snicker. She added transparency to a process many of us will face, a diagnosis of cancer, so we could live vicariously through her, thus preparing ourselves should the worst ever come to our family.
Then she picked it up a notch and turned her jet setter ways into an all out cancer journey, showing the world cancer treatment does exist outside the US, just as effective and for a fraction of the costs.
She has the film to prove it.
I have the studies.
Hopefully soon, the wealth of information my body holds in regards to fighting my lymphoma will be categorized, organized and able to be reviewed by those who want to access the information and collaborate to find a cure.

Sunday, June 28, 2009

Southern Goodness

"Cheesy Bisquits are evidence God loves us and wants us to be happy." -Brynn, reworking the famous Benjamin Franklin quote.

I didn't really know anything about the "dirty down south" except some of the normal northern stereotypes, what I jad seen on tv, or heard from my sister, who lived here with her husband while he did graduate research at appalacha state university a couple years back.
Here is what I now know: southern hospitality is a very real thing. We are having the time of our lives.
X keeps referring to Chip and Colleen's house (we'll call them c and c) as "the hotel."
When he stood corrected yesterday he said "well, its like a hotel.... She made us pancakes.... They have a pool..." His rationale was full of thoughtful pauses for dramatic effect.
I may say, with Colleen as coordinator, this may be better than any hotel we have been to. The house is gorgeous with a pool in the back, right on the golf course (which x, at 6, has been begging to play on). The fridge is stocked, and we went to a montgomery farmers market yesterday where I discovered all sorts of southern goodness that I had never heard of.
There were jams made from local fruits that I didn't know existed and garlic pickles, which I tried despite the communal testing dish. My immediate health was worth the risk to try those garlic dill crisps.
Those are definately worth writing home about.
While we were there I clicked away at my blackberry so I could google the recipes at home.
Next we were off to the train station, which had been kept beautifully in all its glory. X picked up some confederate money for his collection (in DC he and lexi picked up fake obama million dollar bills for dad's day).
Colleen picked him up a confederate flag, which x quickly turned to the side and claimed it was an "x" flag.
I did not know that Montgomery is home to the confederate white house and that we had traveled to "the heart of winn dixie," but I will say with what I've seen, I could have a little bit of a belle in me.
Of course, we ladies fit some shopping in, hitting up a huge sports store and some cute boutiques before going back to rest out the afternoon heat. We did make a quick stop for some "cheesy bisquits" which x has declared his new favorite thing.
Those are worth replicating.
When I get home, I am definately trying my hands at creating them. The AC makes the 100+ temperatures bearable, but the heat did get to us.
X is living in the pool and barely rested before his big evening surprise: a montgomery biscuits game!
Montgomery has a AAA team having a game last night that colleen planned out and brynn had kept for x as a big surprise. We didn't tell him where we were going so we could see the look on his face as he entered the stadium.
I love the awestruck look of a child experiencing something new. It took a second for the reality to kick in and then he was off and exploring.
He had to have a #1 fan finger and is now the proud wearer of a montgomery hat in camaflouge, which he picked to be just like his newfound male idol, jake, who wears a camoflauge red sox hat.
X is one lucky child, not only since he gets to go great places, but since he has so many wonderful male role models.
Sometimes, I look around and wonder where all the good men are but then I realize how many we have. According to a study cited in Malcolm Gladwel's "Outliers" the primary difference in parenting styles between social classes is that children of upper or middle class parents are encouraged at an early age to engage in conversation, both socially and in everyday situations (like speaking to the doctor themselves when they are sick about their illness or the cashier when making a purchase).
Thank goodness the best things in life are free.
Any person can encourage interaction in their children. I do think having my parents forcing me into "adult" interactions at a young age helped me mature and grow.
I'm hoping to keep up the trend.
It's definately made easier with some good friends.
Jake gained some serious points with x (as if he needed more) by catching a hot dog shot out of a canon when the free hot dog cart drove around the field.

As soon as we saw the cart and the announcement to "stand uo for a free hotdog" brynn, x and I were on our feet waving our biscuit fan and #1 finger.
I thought we may have been missed but the pros in the cart had the physics down, the dog landed across the aisle from jake, who dove to get it. X got a free hot dog due to Jake's due diligence.
X definately has his mom in him.
He collected so much free stuff it overflowed my gigantic purse: a frisbee from our bbq dinner, a team poster, schedule, cup. His album is filling up quick and the week has barely started.

Saturday, June 27, 2009

FYY- for informations sake, I almost had to brutally attack jake who tried to be funny by calling in the middle of my writing. I thought I had lost the post, but luckily for him, it could be saved. Being stuck in a car on a road trip is a lot like being disabled. Doing the simplest task you generally think nothing of completing is a gigantic pain in the ass. Just think about all the inconveniences of the roadtrip(or ours for example): the sweatshirt is in the luggage strapped to the top of the car so even though you're freezing from the ac you think long and hard about getting it since you know you'll have to climb up to the roof, loosen the ties, unzip the container just to get a peak at the bag you want forget about actually reaching the coveted sweatshirt. The list of inconveniences go on, need to put in contacts or brush your teeth, hope you find a clean bathroom and that strangers don't inappropriately invade your space when you have clearly claimed your spot (that's special for a woman in VA). If you need to go to the bathroom, it's not as simple as just getting up and walking there, you have to find an exit, an exit that will have facilities, and good luck with getting to an exit if you happen to be stuck in standstill traffic, traveling in vt where the exits span thirty miles apart with no facilities or really in a hurry hoping to get to your destination asap.                        Simple tasks require a lot of thought and preparation, the inconvenience vs the benefit needs to be evaluated. Just how badly do you need to go to the bathroom or get that cup of coffee? Is it worth the time and effort put in to get it.          So goes the tale of becoming disabled, suddenly the simple daily tasks of life are not simple. They require energy, time, and preparation. It takes mental evaluation regarding what will be needed, and if something goes wrong or is forgotten all hell breaks loose.  I "lost" my gum for our entire trip only to realiza later that the wristlette it was in had been moved to a different bag, in my sight, across the back seat of the car. It was just too much of a struggle to find it. Just like being disabled, what you want could be in your sight, right next to you,but you have to think long and hard, strategize, about how you're going to get what you need.

Friday, June 26, 2009

On the road again

This posting is coming from my sweet pink blackberry, again, but the difference this time is Brynn, Jake, xander, Bailey and I are well on our to our final distination: Montgomery Alabama. I have to admit, Montgomery never really made my travel list. Alabama hadn't even made my "hundred places to go before I die" list or even "the bucket list.". It didn't make any of these lists, because I don't have these.These lists could be terribly self defeating. I don't want to be laying in my death bed trying to reach for my "To do in life" checklist and feeling like a failure. Here is an ironic tidbit, the young dot com millionaire who wrote the book, "A thousand places to see before you die" (or something of that nature, you get the point) died, suddenly, in his forties. Maybe, by writing a book like that, you are just asking destiny to knock you off early. He never even finished seeing the thousand places. I do have ideas, however, that I would like to accomplish.It's a list, in my head, for me to keep. Maybe I will write it down some time. As far as places I have seen, x and I fell asleep before NYC last night. I opened my eyes to the sight of gigantic walls and fencing, feeling the lull of stop-and-go traffic until we hit the george washington bridge and everything just stopped. We joked that we started the road trip just to park on the gw. I said I was calling my friends to see if they wanted to hang out, seeing as it took over an hour to even move. Jake, who was driving, out the car in park and got out to give bailey water. I finally just went back to sleep, sprawled out across the back seat of the jeep cherokee loredo. I'll admit, it was more comfortable than I thought it would be, but the secret to relaxing on any road trip with child....... Ativan. That is ativan, an anti-anxiety medication, and I am saying THE PARENTS should have it. What kind of parent do you think I am? Everybody knows the benadryl and the dramamine are for the kids. Just kidding, but I was eyeing the bottles in the line at the pharmacy yesterday, just in case. X and I woke up for breakfast in virginia a little before nine am. Brynn and I had come prepared to be cheap and eat on the road. There was a nice picnic area at the rest stop where we relaxed, letting bailey and x run around. Brynn brought muffins, pb and j, trail mix and granola bars. Being the great minds we are and thinking alike, I brought trail mix and granola too, along with smoothies, bananas, strawberries, and turkey. Instead of the "staycation" we're embarking on a "sharecation.". Pack the food, split the gas and go, go, go. Stay with someone you know. This is how I will be adventuring this summer. We can thank mom for letting me mooch off her hard work in DC and F for his gorgeous place in upstate VT, and now Brynn for liking me enough as a friend to want to spend 24 hours on a roadtrip with X and I going to mom, Colleen's, house in montgomery. We're almost through NC now, which I have to say, looks a lot like New England minus the mountains and rivers. I did get a little lost talking to the gas station attendent. Our accents didn't quite mesh. We toured gas stations and truck stops through out the "boros." That would be greensboro, etc. I did get all giddy going through the Raleigh-Durham areas. NC has some amazing colleges and hospitals. If life were different, I might have set up shop there for a while. I get all giddy going through New Haven too, since all growing up when I picked a pretend dream college my pick was always Yale. I picked yale because I saw harvard and didn't like it. Dartmouth was too close for comfort. I have never even seen or set foot on the yale campus, but in my little mind, those were the college options. I also wanted a college in one of the nastiest, scariest areas that could be found. Boston wasn't badass enough. New Haven fit the bill, but when push comes to shove, the dirty down Bronx wins. Cheers to. My alma mater, CNR. Rest time now.

Thursday, June 25, 2009

Cancer Girl’s Guide To Life

I am back off on big adventures today (as if they ever stopped).
My friend Brynn, Jacob, Xander, Bailey (their 120 lb. golden retriever, and I are off to Alabama for a week.
Road trip start time is 7pm from my house, perfect timing for me to coach one last soccer practice from 5:30-6:30 before our journey starts.
Really, my adventures haven’t stopped, I just haven’t been able to keep you al apprised of all of them.
On Sunday, Jon, Lexi, Xander and I joined one crazy frog catching competition in VT. We couldn’t have had a better day for it, and among the prizes the kids caught were bull frogs, pollywogs, tadpoles, and salamanders.
Xander, just for the day and just during his catching time, was renamed “Xander Salamander.”
Lexi even shed some of her girl ways and trekked into the murky pond for better catching.
I was impressed.
We joined a great group.
Since then, I have been working on life au naturale.
It is harvesting time for some of the best fruits and vegetables in the northeast.
Xander and I went strawberry picking at Peachblow Farms in Charlestown, where we go every year, and showed up just as their asparagus was being picked.
I didn’t get around to growing asparagus this year.
I also didn’t get around to growing it last year or the three years before that, but I am one serious asparagus eater.
Thank goodness I am surrounded by country farm woman who know how to harvest and preserve (because I am lost). The woman in charge said asparagus can be frozen.
I bought 10 lbs and rolled and froze them all ready.
Ten pounds will hardly get me through the winter, but filling my pint sized freezer full over asparagus is not going to go over with my chicken nugget and ice cream loving men.
I have been wanting to invest in a new freezer.
I was thinking that the general savings of getting the fresh, local food I would freeze at harvest time would compensate for the cost.
That was until I discovered that an energy star model costs, minimum $650.
Hhhhmmmmm. . . . .I am still mulling it over.
My current freezer is getting fuller.
I tried my hand at jamming and canning yesterday.
I have to say, I impressed myself.
I also have to say, it’s not as hard and tedious a process as I remember from being a child.
Drying fruits, now that requires time and patience.
I made strawberry rhubarb jam, and it smells good.
I left a little out to try.
Thankfully, Aunt B stopped by just as I was finishing to provide some helpful tips regarding the finishing process.
Who knew she was so handy in so many ways?
I also had to make a couple emergency calls to my mother, as in “So how, exactly do you seal these things? What is paraffin wax? And how do I ‘boil can jam?’”
But I think I have it down.
It certainly went better than my dandelion maple jam debaucle when I decided to create an entire new recipe (have you ever heard of maple dandelion jam?) because I couldn’t find a decent recipe for dandelion blossom.
My jam did not gel. I changed my goal after I saw the results to “dandelion/maple syrup.”
I’m pretending I meant it as an all natural, local sweetener for teas and coffee, like the agave nectar I use as a sugar substitute.
However, I don’t know how to can that properly, and none of the cookbooks or the internet are going to tell me how to on a recipe I just made up (I was getting a little ahead of myself).
I’ll be learning to can with the wax today, probably this morning, because it gets hot in the kitchen with all that boiling.
I’ll be making strawberry jam (no rhubarb, which came from a local farm too), and freezing some of the goods, before I finish packing up for our big adventure to Alabama.
I saw my professionals at Dartmouth yesterday and had a great appointment.
My labs continue to look great.
Dr. Meehan is pleased. He continues to do research on post-transplant outcomes at Dartmouth.
I’m intrigued.
I love research. I have to admit, research is probably my first great love, ever since I tried to make a telescope and microscope out of toilet and wrapping paper tubes at 6 or 7 years old.
I would do pretend epidemiological (finding the cause) research since I was 12 years old.
What makes this fascination even creepier and more ironic, is my specific areas of fascination were virally induced possibly fatal diseases.
Under this realm included the obvious, HIV/AIDs (remember, I am part of the first generation who has not known a world without this disease. The first death I heard of from AIDs-related illness was a girl my age (12 or 13 years old) who had been raped and contracted the disease. Think about growing up in THIS world), and wait for it, drumroll, blood cancers or diseases with severe bone marrow dysfunction.
Feel free to play the theme song to twilight zone in your head on this one.
Suffice to say, I do feel I am sufficiently prepared as far as intellect to battle my lymphoma.
I, actually, think I sometimes know too much.
Ignorance is bliss, people. Learn from my experience.
My life goal, my dream work, is exactly what I am doing now.
I am doing research like my life depends on it. I am writing my findings and spreading the knowledge of my disease process.
I did think I would at somepoint get a blood cancer.
I was an obsessive cancerphobe since I contracted mono in the sixth grade.
I added up all the possible causes.
I had mono. I lived underneath power lines, which in about 1993 or 1994 was linked to childhood leukemia in NV.
I was screwed.
I’m not screwed. I am exactly where I am meant to be.
I may not find the “cure” to cancer, but I am going to do the best I can to make fighting cancer a whole lot easier.

Wednesday, June 24, 2009

Appointment Day

Today is Appointment Day At Dartmouth Medical's Norris Cotton Cancer Center.
I meet with big man #2, Dr. Meehan and his right hand woman, Pr. Beth Kimtis (Who was it that said, "Behind every good man stands a better woman."?)
I have been seeing this team somewhat frequently to establish continuity of care between my primary hospital (Dana Farber) and my old, but hometown cancer center, of Dartmouth Medical.
This connection and partnership is important to establish due to the huge numbers of emergent variables that can occur post transplant that may require emergent care.
It is scary enough to have to undergo such a highly specialized procedure as an allo-stem cell transplant, but then to realize there is no one that has any idea about your case and how to treat it if something happens within two hours drive is even scarier.
Basically, a lack of communication between the two hospitals could mean a lot of undue fear and stress for us poor patients.
Thank goodness for good people who understand.

FREE TRIP TO DC!


Join New Hampshire Working Families Win in Washington DC (or in Keene and Claremont) for the Healthcare for American NOW! National Day of Action!
Quality, affordable healthcare for all people in America is possible and now is the time for real change!

When we work together, in one voice, we are strong. Our Members of Congress and our Senators need to hear from us this week on how important a strong public health insurance option is for our families and our communities health.

Join us this week in Washington D.C. or at a TAKE ACION PARTY in Keene or Claremont to send the message- NOW is the time to transform our healthcare system so that all families can afford to go to a doctor when they are sick, to the hospital when they are injured and to not fear bankruptcy because they just lost their job.
TAKE ACTION!
1) Join the Free Bus to DC for the June 25th National Day of Action-ALL WE NEED IS YOU!
Rally and meet with our Senators and Representatives to the U.S. Congress about our need for quality, affordable healthcare.
***Click here to reserve a seat!***


2) Can't go on the Bus to DC? JOIN US FOR ONE OF OUR TAKE ACTION PARTY'S ON WEDNESDAY NIGHT!
We will make calls to Senator Greggs Office, write letters to Senator Shaheen and Congressman Hodes about the importance for real healthcare reform! Join us for refreshments, healthcare stories and action!
Claremont TAKE ACTION/SEND OFF Party
June 24th-- 6:00pm
First Congregational Church, Claremont, NH
Carpool to Bus leaves at 7:00pm

3) Additional WEEK OF ACTION EVENTS

JUNE 25TH- West Lebanon- Visibility Event for National Healthcare Reform
Front of Walgreens on RT 12A, 4-7pm, call Linda at 603.543.1521

JUNE 27TH- KEENE- Walk for Fitness- Community Event
9:00-11:00am at the Rail Road Square in Keene, NH
call Julia Ferrari at 603-239-6830 to sign up for the walk or to volunteer
Call Jaime at 603-504-2906, email at JAIME@WFWIN.ORG or check out our website www.workingfamilieswin.org for more information

Monday, June 22, 2009

Hopeful Acceptance



Hopeful Acceptance: It’s Not Just About Cancer

It’s fun wading through the waters and checking out survivors perspectives. There are so many. There are so many like me with like experiences.

Having all faced our mortality head on it the themes on many of our pages clear: change, loss, understanding, adapting.

It is amazing how different we can superficially be, but when it all goes down, when the decisions are life and death, we are experiencing the same feelings.

On Christine Lynd’s Edge of Light (http://chris-theedgeoflight.blogspot.com) she writes about finding other bloggers who share her experiences and then responds:

I knew about Laurie Kingston’s book launch on May 7th, but didn’t realize that the content from the book comes from her blog Not Just About Cancer.
In one of her posts called Living With It, she lists some of the comments that resonated with her from the conference sessions she attended.
Because some of the items on her list also resonated with me, I thought I’d comment on the comments she noted (if that makes sense).
It's hard to explain to people that we will never be "done with treatment." I agree, this can be hard for others to understand. They ask me how many treatments I’ll have and when I’ll be finished. The reality is that I’ll probably be on some sort of treatment for the rest of my life and there is no way to predict how long each one will last. After an undetermined period of time the cancer will start to become immune to a particular drug. When that happens, you move on to another drug and start the process again.
Me: Better yet, try explaining to people that you are “taking a break from treatment” because the cure is killing you. FYI- I am taking a break through the summer. When I get my PET results on JULY 30th, I will determine my course of treatment with the healthcare team.
"Coping is temporary. Adapting is permanent." I think this is what Sue Hendler wrote about in her column, Getting used to the 'new normal' takes some time. You have to learn to adapt to the new normal and continue on with your life as best you can.
Me: I, too, love this quote.

Talking about our cancer "takes the power out of it. It's like deflating a balloon." For me, as an introvert, talking with the right people is good; writing about it is even better. (See Bloggin' is good for the Noggin).

ME: There is a scene in “Milk” where Sean Penn (Harvey Milk) posts a death threat to his refridgerator and says “There, see, it’s there. We need to face this. It can’t hurt us if we face it.” Stare Down that cancer people

Strike a balance between hope and acceptance - "hopeful acceptance." I really like this term – hopeful acceptance. I’m not in denial, but I’m open to the possibilities that every day brings my way.
I heard about this aptly titled book browsing among the cancer bloggers, which I haven’t done in a while.
Me: I have been looking for this term for a while. Reading this is like an “aha moment.” I have been debating for a while about optimism vs. pessimism. I say “God helps those that help themselves,” and I feel, that by having a contingency care plan in place that I am hopefully accepting the reality of my disease. I am not pessimistic and thinking that I have cancer, I’ll be forced to go to Germany for treatment. I’m hopefully accepting that this is the likely reality based on my test results.

Another good find is Denis, a man who has been in remission from T-PLL for 7.5 years and a former clinical oncology nurse, who writes to continue to give his experience meaning, and hopefully, to alleviate the pain of others who are coping with similar trials.
He runs a book club off his site http://beingcancer.net/ that’s now reading “The Last Lecture.”

I want to give a big “thank you” to whoever found me and put me on that Top 50 Cancer Site List. I’m meeting some great people.

I am signing up for the club. I all ready had the book. There is a reason why it has been on The New York Times Best Seller List for months.

Growing up, every Sunday, I would study the bestseller list.
I would look for patterns in the titles and try to find the common denominator that would ensure a best seller.
I wanted to see my name, my title, my book on that list.
I always focused on the non-fiction titles. I knew that was where I wanted to be.
I was such a geek.
I also read the great American classic to find the common patterns and themes that made them classics.
There is a reason some books have the staying power over years of life and some fizzle out and die.
I wanted to be that book, that shining star that kids are groaning about having to read over summer vacation, because my writing was that life altering and time defining.
I wanted to write the book that could transform the reader and take them to the time and place where I was and enjoy it like I did.
Reading is the ultimate time machine. It is the only way I could transport myself instantaneously.
I wanted to have that talent, but I’m not sure people want in on this life.
I was thinking, and still am, of writing a cross breed mutt of a book that incorporates the emotion of Crime and Punishment with the coming of age scenarios seen in Catcher In The Rye with the Gonzo, hysterical reporting style of “Fear and Loathing in Las Vegas.”
Of course, that couldn’t be all, because my love of books and styles are as multifaceted as me.
Actually, I have my book pitch. I have a good portion of my first book written. I know When it will end. I also have the title of my second, and a third in the works that is more clinical than the other two.
Aren't there any publishers out there who want to solicit a manuscript?
I am a money maker, a cash cow. My experience is bankable.
I also have children’s books I have written. My first is currently being illustrated by Chris LoParco, and I am so excited for our partnership.
He did marry my best friend from college so we have been family for a while, but I think my writing with his drawing is a match made in heaven.
He has jokes in his pictures like I joke in my words. Cancer for kids needs to be funny.
Anyway, I do want to find more about Denis, maybe you should check him out too.

Motivational Thought For The Day

Happy Monday People
I know we are all in need of a little motivation, since it is officially summer, and hey, who wants to be in the office?
Here is the motivational thought for the day:
This animal below is called a naked mole rat.

Everybody, including all the baldies, when you are feeling bad for yourself today, please just think, I could look like this.

Saturday, June 20, 2009

DC BABY

I really wish I had pictures to go alongside this. I would love you all to have a visual, but not today, not this morning, I am still waking. Maybe tomorrow......... I have to admit, I was a litte ambivalent about jumping in the car with two kids and my father to travel ten hours to an unfamiliar city, even if that city is dc with all its kid friendly activities. But all those fears are long gone now. We are having a great time. yesterday was great and our plans for the day are just as good: union station, swimming, museum, zoo and then home. We have jam packed our tourist outings in, and we even made time for me to see my long lost, much loved, room mate from freshman year of college. Our friends would call us "the odd couple" back then, because we are, in many ways, extremely different. She is histrionic and outlandish, always theatrical with make-up and hair to the nines. I came in country with a couple pairs of jeans and sneakers and the same hair style, no make-up. She was loud and boisterous, hollering out our window at all hours of the night into the green. I was more laid back and liked my sleep. And did I mention that she is black and I am white, even though we both marked "other" on those ethnicity boxes when they asked. Neither one of us thought it was that important to be defined by a race or a color. I think this is how we ended up together. God doesn't make mistakes. But this equation worked out. We would play off each other and pick up where the other left off. We would play practical jokes where we would convince our group of friends to pretend that a casual bystander was a celebrity. We would scream, yell, and snap pictures like crazed teenagers seeing usher or justin timberlake until a new mass believed us and started in. Then, we would run away, consumed in giggles that some unsuspecting person is getting mobbed for pics and asked for autographs. . On one particularly silly saturday at the mall, four of us decided to wander nonchalantly towards our car until a motorist desperate to find a space would begin following, tracking us at our heels. We'd all walk to the car, grab the handles like we were going to get in, and then make a break for it, watching the drivers face fall in devastation as we te-he-hed all the way out of there. So wrong and yet so fun. When Cheryl got to our room to meet up last night one of the first things to come out of her mouth was "somethings don't change" and you know what, they don't. I had ordered her cheese pizza and fruity bottle of chardonnay before she got to the door, but still gave her the menu so she could pick it out herself. She quickly plopped herself on the bed in front of x and preceeded to tell him that she was "his momma's freshman roomate, and maybean he doesn't think that means anything now, but it does.". We were consumed by giggles in the cab ride when she tried to tell the cabbie x was 4 to get cheaper fare only to have lexi boldly announce, "no, he is not!" With x following "yeah, I am six!" Stubborbly. Way to blow up our spot with honesty kids. DC gets expensive. The jokes started rolling then since the kids would just not let the age thing go and we had our first big glass of wine into us before going to see "up" in 3d.      . "No getting down before we see UP!" Cheryl admonished the kids before the giggles escaped. The same cabbie we tried to get cheap kiddie fare out of over paid cheryl her change, giving her $25 instead of the $10 that was deserved. He was a good sport as cheryl returned the cash and joked about our honesty. When we entered the cineplex I was greeted by a big wall of keys and in a moment of thoughtlessness I stated, "great if I lose my keys I know where they are. They just hang them right here.". Wrong-o hillary. It was a display against drunk driving. The keys were those of dead drunken driving  teens.there should be a rule against drunk thinking. I would not be finding my keys there.  Again, the giggles. Somethings never do change, kike cheryl and I being lightweight cheap dates. Giggles again when "aaron" the movie theatre guy thought we were cute enough to get a discount. Giggles againa as we tried to figure out how we looked: if we looked like a PC family with lexi as our love child and x coming out pigmentally challenged or if we looked like the nannies or two moms taking are kids together to the movies. Giggles again when I busted out the coffee cups with lids in the theatre and she picked the wine from her bag (waste not, want not) and watched up with x and lex while enjoying our grown up drinks. We laughed about how we did this in college, how we're doing it now with the kids, and how we will behave when we retire someplace warm in the caribbean. Somethings, especially the good things, don't ever change.

Friday, June 19, 2009

First Day Away

This is my first official posting for my stay-away vacation in DC. Like my last mini-vacation for grace's graduation, I am rat-a-tat-tatting on my blackberry from the privacy of the bathroom. I have become quite the hotel bathroom connaisseur with all this hiding and writing. I do have to say the marriot in portland's bathroom is superior to the hyatt regency's in DC for my relaxing and writing needs. They had a granite seat in the shower I can curl up in, though I am certainly not complaining about the space provided here. The bathroom was the first thing alexis checked out when we got into the hotel at midnight last night after cruising for eleven hours in torrential downpouring rain. The granite flooring, clean lined glass shelving, large mirror and contemporary lighting went straight to her little unspoiled heart. I was too groggy from my slumber in the car and too busy dealing with xander's moaning and groaning that I refused to snuggle with him in the back of the van to truly appreciate the awe inspired look on her face when we entered, but she was definately taking in the scenery. Today our big plan includes The Smithsonian Air and Space and Natural History museums. Thank you "night at the museum" for giving the kids a preview of what they'll see. They were jumping out of their seats screaming for "Rexie" in the car last night. McDonalds is also helping out since their meal toys are night at the museum themed.X has a rex and both kids got einstein bobble heads on the trip last night. That was a good segway into a little educational session about how we can tie in lexi's school learning into our real life adventures. I guess her social studies class was reviwing DC when she left. She's putting together a scrap book with journal entries to present when she gets back. In my cleaning/organization frenzy I found all the pieces to our historic digital camera. I put it together yesterday and xander now has his own equipment. He is quite the photog. I love to see the perspective from that age and size. I have been in touch with Sen. Judd Gregg's office (R-NH) to get a formal tour of the capital building and his office. He appointed my mother to the Board of Hygiene when I was a child, and I wanted my kids to share a similar experience, but the good senator is out of town. We will be able to meet with his policy director, ask some questions, and hopefully get some kodak moments. I, personally, would like a pic from behind his desk so I can pretend I was , at one point, an interim politician. If you haven't been reading the news, your head has been stuck in the sand, or you have been in an isolation room (I'm talking to you transplanters on that one) you might not have heard, but health care reform is on the table in a big way for policy reform this summer. An article in the Baltimore sun by Susan Reimer states, "we are beginning what they are calling a 'historic summerlong debate' on healthcare..... All the players- hospitals, doctors, insurance companies, drug companies- are at the table because, as on wag said, "they don't want to be on the menu." Unfortunately it sounds like some key players have been sidelined, and those people are the patients. Maybe it's due to our lack of a major organization looking out for our "special interests," which are, in my opinion life, liberty and the pursuit of happiness. I guess if none of these other healthcare "players" at the roundtable will be on the menu, someone has to be. I don't want it to be me. Do we have any volunteers for this position? I think that number would about equal those of us who volunteered to be patients. An affordable accessible system where costs and profits are not the grand ruler but patient care is primary would certainly help towards the goal of life, liberty, and pursuit of happiness for the sick. Really, individually, I would just like not to have to decide between receiving healthcare and losing my house. I would like to not have the fear that I am going to lose the little income I have and starve because the insurance companies have set up so many paperwork and evidence traps for me to fall into so I will stop ruining their profit margin that I can not focus on healing. I can not tell you how badly I would like to be officially involved in these discussions using my professional perspectives as a patient, provider, and small business owner. For today though, hopefully, I will at least have the opportunity to pretend.

Thursday, June 18, 2009

Wednesday, June 17, 2009

Update From Dad


Hi to all
I haven't written in a while. Hillary has her own blog. It is now listed on the American Cancer Society home page as a resource. I found it and it's in the top 20 resources read in the country.!! Before she started her 2nd bone marrow transplant Father Stan, our special priest told her he talked with god and she is meant to a be a leader in fight against cancer. She has to spread the word!

She is an inspiration. She looks at each day as something not to take for granted. Maybe she will need to stay in bed or maybe she can go out and actually visit with people now! She has been almost 9 months now with just minor face to face meeting with people. We go through so much of our lives ignoring the simple pleasures of a good visit with friends. You don't know what you are missing until it's too late. Hillary has opened my eyes. I enjoy meeting new people and now collecting friends.

She is doing quite well. She has some Health issues, DAAA. That was a stupid comment. She does not show that bad side at all. You have never meet anyone with a positive outlook as Hillary. I think looking at how short your life can be makes you grow up fast and look for the best.

I have added her last posting to the blog. Our community has been wonderful. We enjoy so much support it is overwhelming. We can't thank you all enough for helping us get past this dreaded disease and come out stronger, at least emotionally. Hillary is getting better daily. Thats the best fathers day present anyone can ask for.
Vic

Cheers: To Living Life to The Fullest


I think the emotion I felt when I got the card in the mail from Charlestown Primary School yesterday was relief.
I didn’t recognize it.a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="http://3.bp.blogspot.com/_i1kSkZv7L-E/Sjjh4gVaWSI/AAAAAAAABzk/BnZR1xe2tew/s1600-h/breathe-you-are-alive.jpg">
It’s been a while since I felt that emotion.
Tell me if this is correct, but it felt like a burden had been lifted off my back.
I wanted to jump from roof tops and say “Hooray, I can buy those grape leaves at the super market! I don’t have to worry so much anymore!”
For those of you who don’t know, grape leaves are a Greek, or just Middle Eastern, favorite. They are also a favorite of mine since a friend taught me how to make them in college. They are grape leaves wrapped around rice with spices.
Very good for you and tasty too.
My first urge was to drop my budget warrior ways, throw out the meticulously organized coupon book and the Sunday grocery store sale fliers I pen threw every weekend to compile my shopping list to maximize each and every savings possible and shop like a crazy woman.
But then, of course, reality set in.
I shopped.
I headed right to Rite Aid and got my prescriptions filled.
Actually, I got one prescription filled since one wasn’t available in its entirety. Thank goodness I am organized and have had this happen one too many times. I can handle waiting until NEXT WEDSNESDAY to receive it.
Then I started to wonder, “Does this mean my parents aren’t going to pay for me and the kids when we run off to DC this weekend?”
Yes, folks, you read me right, I am going to DC.
My father asked me yesterday if I wanted to go to Washington for the weekend since mom will be there for a conference.
I love mooching off mom and staying at her swanky hotels.
Since we (Xander and I) are feeling good, we really have nothing better to do. A family road trip with Dad, Alexis, Xander and I to meet mom in DC on Thursday night sounds just like what the doctor ordered.
We hope to get to DC about 10 or 11 to the HYATT REGENCY where my mother is staying.
Hello, Hyatt.
Do I feel big time or what?
Actually, it’s “or what” since my mom is there working with the North East Regional Board of Dental Examiners and that is how I am allowed in the doors to experience such luxury.It really doesn’t matter to me how I got in, but let’s be honest, I do hope mom and dad are so excited for our company they want to make sure our quick family vacation is comfortable.
If I am sounding spoiled, I’ll admit, I am.
I feel a sense of relief, but not that relieved. I have a cancer cloud hanging over my head that is threatening to rain treatments from a whole different continent.
Feeling financially secure, or secure at all, is not really in the crystal ball.
I am very blessed to be well taken care of by my two parents, and now Alexis and Xander get to have the same experiences I had as a child.
The first time I traveled to DC with my mom on business was when I was 6 years old.
Xander has been tagging along with me on her trips since he was two. Alexis started last year.
I don’t see the trend stopping anytime soon. At least I hope it doesn’t.
I remember one of the first times I went to Washington when I was 6 or 7, and after 10 hours in the car, when we got to the hotel lobby, my parents let me go to the bathroom all by myself.
I felt so big time. I was such a big girl.
Unfortunately, that was the time automatic flush toilets were being introduced, and of course, they had this luxury at The L’Enfant Plaza.
They did not have this luxury in NH or anywhere else I had ever seen.
I was so small I would trip the sensor that said I existed then I would move and it said I had left or just didn’t exist anymore.
The toilet kept flushing on me.
I thought I was going to be sucked up and attacked by this monster toilet.
I did have a fear of toilets when I was younger to start with, and this crazy toilet whooshing loudly and splashing water everywhere wasn’t helping.
I don’t remember if I was ever able to do what I went there to do, but I do remember running really quickly back to the lobby and then pretending everything was okay.
All attempts at pretending to be a mini-adult that vacation failed miserably, Later in the weekend, we went to one of our favorite restaurants, Paper Moon, in Georgetown (I don’t know if this still exists, but it was good). I tried the escargot.
I really liked escargot, except it didn’t like me back.I ended up putting that escargot in those funky flushing toilets later that night.
I still, to this day, have never again eaten snails.
I am excited. A burden has been lifted, and even better, it was a burden I had so long I had forgotten I was living with it. I can focus on the adventures at hand I have planned.
I have many, many adventures planned for the summer.
I am grabbing good friends and family and traveling. I’m bringing back the family road trip.
Something powerful is in the atmosphere, in the environment, in the general milieu of these times in America. I think it is the feeling of history happening.
I say, I-95 is the Rte 66 of our times. For all those missing the analogy, Rte 66 was a much traveled route of road that went from one coast to the next. People like Jack Kerouc chronicled their trips lamenting on periods of self discovery as the adventured through a new environment.
I am adventuring through new things everyday, and I barely have to leave my home, but now I need out.
I have felt the time is right, history is calling, and someone needs to chronicle the events from their perspective for a while now, and soon I set of to do it.
The East coast is where it’s at.
A week from Thursday, Xander and I will be joining Bynn, Jake, and Bailey to head for Montgomery, Alabama to stay with Brynn’s mom, Colleen.
I don’t think you can do an all-american millennial road trip better than in a forest green jeep Cherokee with a golden retriever in the hatch and the luggage on the roof.
I have never been to the south. I think it’s time I got my southern belle on.
Colleen and I have been jabbering online making plans and Bryn told me of more of the events.
I’m really excited to have new experiences and see things I have never seen even though I am doing all this specifically because I know I may never get the opportunity again.
This is what living life to its fullest is, people.
However, I want you all to understand that these travel trips are budget friendly.
Due to my restrictions, I pack food, cutting a major cost from the budget.
I’m actually thankful I was forced into this habit by the transplant. Not only is it more cost-effective and budget friendly, but it is just better for you.
I also don’t want to run the risk of getting that McTummy again.
If you don’t remember, a McDonald’s binge landed me in the hospital with gastroenteritis (Nausea, vomiting, chills, etc.)
A second attempt at McDonald’s produced a similar result.
I keep telling myself it’s just a virus, but I’ll keep to packing.
My new found favorite foods for keeping myself healthy, wealthy, and wise while I am on the move: dehydrated fruit, trail mixes, granola/protein bars, and smoothies.
I must have food with me at all times. The aforementioned foods are what I carry daily, in my large, overworked purse.
When I need to eat, I need to eat. This is partially the steroids talking, but it is also partially me. When I need food I need it NOW or there is a risk of hypoglycemic meltdown with crankiness and sweating.
I also throw in a drink. Usually one which I have made at home in bulk.
When did people stop doing this and buying cans and bottles all the time?
I finally rounded up some travel bottles. Before I was too cheap to buy them and to scared of the BPAs in plastic irritating my cancer to drink out of those so I had a couple trusty mason jars.
Yes, mason jars. You do what you have to do in hard times, okay?
Luckily, I found some dishwasher safe, stainless steel travel mugs on clearance and my brother was given travel bottles for a college event he participated in.
I think he was just sick of me looking ridiculous, chugging drinks out of jars.
I find myself looking around the world A LOT recently and wonder, “When did this happen?”
For example, I read an article a few months back about how hang drying wash was making a comeback.
“A comeback,” I thought. “Did it ever leave?”
But that’s the country girl in me. I think having clothes that smell like fresh air is a luxury. I also enjoy hanging them. It’s therapeutic, and now that I have energy, I can.
I know I am sounding like some creepy, Betty Crocker housewife type right now, but I am really liking hiding in my house and having the energy to do these very basic practices that the world seems to have lost somewhere along the way.
I learned to make ice cream the other day.
My cousin taught me while the kids were playing.
There is no need to buy a big expensive fancy machine, just get two metal coffee canisters that can fit within each other with enough space to put rock salt in the middle.
Rock salt, as in what we throw on our sidewalks in the winter.
Get some cream or whole milk, add your flavoring, add your fruit, put it in one can.
Take your other can, put the rocksalt in the bottom. Place the can with the goods sealed in this other can and add rock salt around the container. Seal and shake it to make it.
Whala, ice cream. Quick, easy, done deal.
I think I am loving these types of activities because I have always had a “hippie streak” in me.
I was also raised with a family who practiced sustainable farming and did hold to the tenants of “waste not, want not.”
It’s easy for me to be this woman holed up in her home using organic cleaning products, cooking nutritious foods, and maintaining a garden with homemade compost.
It’s easy for me when I am healthy. The trick is how will I do these practices and presesrve them, making what I eat and grow into meals for the future, when I can’t do these practices.
This is the trick. There are lot of good things in theory but would never happen clinically. This lifestyle needs to be convenient to encourage people to participate.
I am lucky. I am motivated.
I do all gardening, healthy cooking, sun drying, organic cleaning, etc. like my life depends on it.
My life may depend on it.
If my environment contributed to my disease I think my cure is in my environment.
Wouldn’t it be amazing to get my scan at the end of July and hear, “You have no cancer. It spontaneously regressed. It must have been just inflammation.”
I’m willing to do and try everything that could save me.
I am not at home having a free for all like Martha Stweart on house arrest. My disease is absolutely a full time job. It is a draining, thankless full time job that exists 24/7.
I want to gain all the knowledge I possibly can from this invader, this mutation of my perfectly well performing body that has made me so sick.
I want people to know that I tried absolutely everything available for treatment because I loved and wanted to stay with them, and if that fails, I want them to know I did my best to stay by their side so I could watch them grow and participate in their lives.
I won’t have my family looking back with regrets and wondering if there was more that could be done in the context of my disease.
There isn’t, I am, everybody is, doing all they can, and just knowing this, just realizing that so many people are rallying behind me and uniting together trying to find ways to relieve my pain and help me gain strength is one of the best life lessons.
And now, on to living life!

Tuesday, June 16, 2009

BIG THANK YOU!

As if taking great care of my pride and joy, my first born, Xander, wasn't enough, I have just received a large check from Xander's school, Charlestown Primary in Charlestown, NH.
I have been raving all year about how happy I am with the staff at Charlestown Primary School (which is also my elementary school alma mater), and I am sure we will continue to be blessed with the fabulous working professionals at, not only Charlestown Primary School, but the Fall Mountain School District.
I really wish everybody could see how touched I am that we have such a great community and school system that loves and supports us.This past winter, students at The Charlestown Primary School participated in "Pennies For Patients," which is a fundraising effort for patients with Leukemia or lymphoma in conjunction with The Leaukemia and lymphoma Foundation (www.llf.org).
I was fortunate enough to be chosen as the patient to support this year.
The staff and students all hoped on board, sending out a letter to parents and placing a poster of me and my family in the school's entrance.
Everybody there has certainly rallied in support of us.At the start of the school year, I met with CPS's multidisciplinary team to discuss how our family would make it through the year and I was met with much love and support.
Mrs. Kane, the school nurse, who had once been my school nurse, made sure to call every time their was a communicable disease in Xander's classroom that he may have been exposed to in an effort to keep me as safe as possible.His teacher, Miss R., stayed in close contact, writing to me daily is needed through a communication log sent back and forth through a folder so I could keep informed about how xander was doing despite my inability to physically join.
Everybody would set up meetings with me to discuss our needs whenever a new issue would arise, and so many did, but it was made easier knowing that for 5 days out of the week, Xander had a caring team at school to care for him and maintain a routine, which is so important with our lives so unstable.
There are too many people to thank, but the school guidance counselor made special time for x and friends to help him socially integrate despite such an emotional time in his life. The school social worker worked diligently to make sure everything was organized.
Anne, his longtime speech pathologist has certainly served as more than just to help develop his language. He has seen her every week since my battle began. We are so lucky to have her.
Kim P. and AW were always upfront with a smile to invite xander into school, even if school was the last place he wanted to be.
X especially found comfort in Mr. G, who he drew in his "trust circle."
Ms. P, Mrs. H, and AL have also gone above and beyond to keep x happy, as well as all the friends, families, and staff that I didn't even meet since I had to hide away from the school all year.Along with the Pennies For Patient fundraiser, wrist bands were sold in Green, the official lymphoma color, with my mantra "You cancervive."It was inspiring to see all the "cancervivors" walking around town in support of our battle.I am sending you all flowers right now.
We will be forever grateful and hope that we will in some way be able to give back through participating in the community for a very longtime.
Thank you so much to everybody.
I'm gushing. I'm going to keep gushing.. . . just somewhere else.
They have gone above and beyond in so many ways.
We are so lucky and grateful to live here and be associated with such a great community and school.

Haunting Memories

I actually slept until a decent, reasonable, time this morning.
I did not write my posting at 4:30 am.
It is now 7:48, and I have just gotten out of bed.
This sudden ability to sleep like a reasonable person may be from tapering the prednisone to 15mg.
It is certainly not from the cocktail I have been taking to knock me out at night so I can get my beauty sleep.
It also my have something to do with the fact that poor, sick, Xander woke up three times last night after finally falling asleep at 10 pm. is getting special treatment because he stills feel sick, but damn, I didn’t think the pain would go on this long.
I know that is a common problem & misconception with just about any surgery.
People have a tendency to look at the timeframe in days, nights, or weeks, then they get incredibly frustrated when they haven’t healed to their standards according to their schedule.
I know it. I have done it. I’m doing it know with Xander.
I just want my baby better!
But our bodies have a whole timeline of their own. It is very scary to realize that despite all the best efforts and health seeking behaviors.
We all have to admit at some point in our lives that we are not in control of everything.
I, personally, really, really, hate that.
Xander was up coughing, gagging and complaining that his throat & ears hurt. He was given three baths. He also seems to have a stomach bug that keeps him running to the toilet.
He was on zithromax and I don’t think this would give him the runs.
The augmentin he was on before the surgery would, but it’s been a while since he has taken that.
His tummy sickness leads me to guess that my little episode was probably viral, again.
I am not in anyway saying I’m not “FOS,” but I am extremely susceptible to viruses (Hello, I am the poster child for the immuno-compromised cancer patient post-transplant and on immuno-suppressants).
Unfortunately, we only know it’s a virus when my son starts exhibiting the same nasty symptoms a couple days later.
While I am suffering, I have the gamut of possible diagnosis running through my head.
An angry bowel is a very bad thing with a hundred different possible outcomes.
I am exceptionally paranoid about my abdomen due to a past experience with a patient.
When life happens, you never know which moments are going to stay with you forever and what they will mean in the future.
I was floated to the Emergency Department when a man was rushed in by his family, having extreme abdominal pain.
He had been fine. He was driving the car up to the mountains in New Hampshire for vacation with his family, which consisted of his wife and a friend.He was absolutely fine that morning. He had packed his car. He had planed a trip.
HE WAS DRIVING!
Then, suddenly, his stomach hurt.
His family rushed him to the nearest emergency department because of his diagnosis.
He had CLL, Chronic Lymphocytic Leukemia.
CLL is a disease, mostly of the elderly, that can be maintained for the long term. People live with this cancer all the time. It is common that the leukemia is not even the cause of death it is so insidious and slow moving.
That’s what this guy thought he had. He had adjusted his life accordingly and was still going about his business, enjoying vacations with the family, then, WHAMO, he has stomach pain and ends up in the emergency department, as my patient.
He was rushed to what I used to term the “dead bed,” where critical patients are placed since it has easy access to the code cart, defibrillator, monitors, etc.
It’s in the direct line of site from where the nurses, doctors, and secretaries sit.
His stomach let loose once he was on the bed, this terrible, gelatinous mound.
Generally working in critical care, where the though process of patient actions is different, I thought it was C-Diff, a common bowel problem from having too many anti-biotics.A seasoned emergency room nurse told me to test it for blood.
Who do you think was right?
The leukemia patient had just lost pints of blood in front of me. He had also simultaneously lost his blood pressure and any color he had in his cheeks when he arrived.
I frantically hung fluids and called for blood, lots of it.
The attending doctor came in and sent me back to the Intensive care Unit to prepare for this patient to be transferred, officially, into my care.
I went back to the unit and paced.I didn’t want this patient. I didn’t want him all alone, on my hands. How could I save him?
I was 22 years old at the time.
I wrestled with the mortality of the situation, like most new health care providers do.
He was fine earlier. He was driving to go on vacation with his loved ones and then suddenly his disease ups and attacks him.
How am I going to keep him alive?
Then I heard the speakers over head stating, “Code Blue. Emergency Department. Code Blue. Emergency Department.”
A code blue is cardiac arrest.
In our small, rural hospital we had a “code team” assembled for emergencies since more hands may be needed in a cardiac arrest situation to do things such as compressions.
The therapists are also involved and they come to counsel the family members.
It was the man with CLL, who would have been transferred into my care in the intensive care unit had he survived.
He didn’t survive.
I am not going to lie, I was relieved it occurred in the emergency department and not in the intensive care unit.
I’m sure if it had, the memory would have even more of a traumatic significance.
God would not do that to me.I was depressed afterwards.
Even being a healthcare provider and having had experience with cardiac arrests and death, I was still trying to control my emotions.
It is human nature to feel great sadness when confronted, face-to-face, with humanities’ mortality, even if that person is not you.
It is also difficult as a provider, especially since many of us are perfectionists who try to control everything.
Death is a big message stating you are not in control, you will never be in total control, despite your best efforts.
I didn’t realize this memory would haunt me when I experienced it.
I didn’t know at the time that I would fight a battle against a lymphoma that just would not leave.
My current situation gives special meaning to this memory.
I don’t think memories are given enough credit regarding how they influence our actions, thoughts, and feelings.
I am scared to death (he he, it’s a joke) of abdominal problems.
I try to control my paranoia, but there is always that thought lurking in the back of my head with the image of this patient, thinking “He was fine that morning. He was headed for vacation with his family.”
On that note, it is summertime, and I am headed for a series of vacations through the warm months.

**These Images are produced by a German artist. I feel terrible I have lost the source and can not give him the much deserved credit for his art that has spoken to me, yet. The e-zine is "Janus" something. Janus, I just discovered, is the roman god of beginnings and endings. You learn something new and interesting every day.***

Monday, June 15, 2009

Happy Monday: Or is it?

Happy (or unhappy, it’s too early to know) Monday.
It is 5:50 am, and I have all ready been up bathing and snuggling a very uncomfortable little boy.
X has been waking up at some point in the middle of the night/ early morning since his surgery.
Sleep stops the routine of pain medicines and he also has a tendency to breath through his mouth, which dries out his throat.
That doesn’t look comfortable to wake up to.
We’ve been doing a lot of middle of the night baths and showers.
Hopefully, this pain will end soon.I told him he would be good to go for “field day” June 18.
I need to call the school today to see if they need chaperones. I have a little bit of a “to-do” list for the day.
June 18th is the official last day of school at Charlestown Primary.
My child will have officially worked through kindergarten and made it into the first grade.
I just need a second to process that. . . . . . . .
All X cares about is that June 18th is going to be a fun day with no homework, outdoor playing, and music.
He’s been talking about it since his surgery.
We have marked it on the calendar so he can count down the days.
We have a lot of calendar worthy events coming up, with my renewed health and all.
I did say I was taking this summer to have FUN, and I meant every single word of that.
We have plans, which include field day, coaching Xander’s soccer team (Go Team Ford!) and having a Master Frog Catching Championship.
Xander is a master Frog catcher. He has seen the pictures of his targets. He is contemplating his strategy so he will be prepared for next Sunday.
This is all just jam packed in a week.
Our family has certainly had an upswing in good news.
Congratulations is in order for my mother, Nancy St.Pierre, who over the past weekend was elected, unanimously, as Dental Hygiene Chair to the ADEX committee.
This is the committee in charge of creating a nationwide, standardized test for dental hygiene students, much like the existing, nationwide standardized test for licensure in nursing.
Currently, dental hygienists take a standardized test to prove competency for licensure, but that test is not accepted in every state in our nation.
This is certainly a barrier to relocation, and as with most health related jobs, dental hygienists are a commodity, having to retake a standardized exam after practicing for 15 years in one state is a huge deterrent to good professionals.
Nursing encountered the same problem in the past. If a person took a standardized test in NH, and passed successfully, that did not necessarily mean they were able to practice in VT, even though, like me, they could live 5 minutes from the border. That was prior to the birth of the NECLEX Exam, which standardized and streamlined one test based on basic knowledge all nurses need to know.
Now, if I take the licensure exam in NH for my registered nursing license, I just have to go through a process of paperwork to obtain my license in VT.
This is what Nancy will be trying to attain with her newly elected position in the dental hygiene field.
I’m gushing. I am so very proud. I never thought I would be bragging on my mother. I always thought it was the parents job to get all excited about their children’s accomplishments, but this is huge.
Big congratulations are in order for that.
Our family is definitely experiencing and upswing in good news.
It certainly was about time. We have had our share of kicks when we were all ready down.
I thank my prednisone a lot for my renewed energy.
I actually have weaned myself to a lower dosage.
Prednisone is a medication I will be on long term for my graft vs. host side effects. Now the trick is to see the minimum dose that is effective in allowing me to live with the quality of life I desire.
Steroids do have terrible, debilitating side effects that must be balanced.
In this instance, my providers and I have decided that the benefit of long term steroid use outweigh the risks.
The risks of long term steroid use include adrenal insufficiency, osteoporosis, weight gain, mood swings and anxiety.
There is also the pesky problem that is caused because steroids are essentially testosterone.
I can get hirsutism (hair everywhere), which is just ugly and unladylike.
It is also ironic.
Will I have to change the name from “baldie’s blog” to “bearded woman’s blog?” However, these are risks I am willing to take to have A LIFE, and that is essentially what has been returned to me.
I have decreased the dose, according to Doctor’s orders (well, a couple days early) to 15 mg daily due to my constant activity that certain borderline on anxiety.
I haven’t been able to get to sleep at night. I wake early in the morning. I go, go, go all day.
Don’t get me wrong, this is a huge relief from the years I have spent bed-ridden, looking out the window, hoping and praying that I would have the energy to do the things I love.
I am certainly not going back to those days, but it is imperative to find a balance whereby I can have a quality of life using steroids and avoid side effects.
Steroids also compromise the immune system. They cause increase in blood sugar, which for prolonged periods, could result in diabetes.I all ready have a compromised immune system, but I don’t want to add insult to injury.
My diet is being honed; however, the addition of steroids weakens the ability to control sugar in the body.
It’s pathophysiology, and it is certainly hard to battle that.
However, this medication regimen I am taking, including my supplements, does having me feeling happy and healthy. That is all I really want.

Sunday, June 14, 2009

The "F" Term: Fiduciary Responsibility

Today was supposed to be a girl’s day.
Today I was supposed to get back on track with the “Hill & Jill” escapades that some of you may have enjoyed through the winter.
But today, the weather is raining on our parade.
To add insult to injury, both our sons decided to wake up sick in the middle of the night, desperately in need of “The Mothering Cure.”
I don’t know what was wrong with Jill’s little man. Our discussion at six went a little like this, “Hhii,” groggy voice, Jill croaking out as small a word as possible in her sleepy haze.
“Hi,” Me, up, showered, popping my twenty am pills and praying to get them all down before my stomach fills up.
“Who is this? Jill?” I ask, as if I had plans with some other person at 6:45 am.
“Yeah,” again, groggy and struggling.“Are you still asleep? Go back to sleep. It’s raining We’ll figure out something to do later.” I stated.
“R********. . . . .” she started to ease out, trying to make a sentence on the very little sleep she had, “kept me up. He was sick” she managed to get out, her voice fading.
“Xander kept me up too.”
He did, the poor guy is still in pain from his tonsils and he woke up coughing and hacking, again needing some mommy love and steam from the shower.
“Okay. Go back to sleep. Call me later when you wake up.”
End of discussion.
Beach day official canceled. It is raining. It’s raining on my beach day. It’s raining on my parade.
That’s okay. I always have a contingency plan. I always have a back-up plan.
My disease had a plan A-Z.
I say had, because I have crossed many of those letters off my list.
I call my current plan, the plan to do everything and anything that could possible cure me, plan Y.
To be clear though, I do have more than a Y & Z contingency plan left.
No freaking out anybody anywhere.
On Sunday, I generally like to write some politically charged opinion.
I have my opinion in place and the statistics and resources to write it, but I’m just not in that kind of mood.
I’m in a storytelling mood today.
If you want stats and politics head to the newspapers or read me later this week.
I was planning a little bonding time with Lexi today, hence the girl day.
We did some serious bonding yesterday.
I really love the ages of 6 and 9 years old. Xander and Lex are so much fun.
Yesterday, J popped up our camper, which went completely unused last year due to our simultaneous treatments (his bowel resection at Dartmouth July 8 and my LDH study July 6).
Happily, the place looked good, minus some holes that can be patched.
The kids, that 6 and 9 year old, went straight to town scrubbing, sweeping, vacuuming, everything that needed to happen so they could sleep in it that very night.
They even made their bed.
Then, the down pour started, and we decided it may be better to postpone the camp out outside our house, but the entire camper still got cleaned by some very determined hands.
Go kids!
Alexis and I also went out to start her very first savings account yesterday at Conn. River Bank in Claremont.
We made this into a big event with just Aunt and Alexis time.We discussed the savings account and how it’s maintained.
The woman who helped open the account was great, and she joined in the fun, answering all of Alexis’s questions, asking her for the pertinent information she could provide, and then giving her the start up goods: a water bottle, a notepad, and a three ring binder with her account information.
After Lexi’s first deposit, which came from saving Easter money and working jobs around the house, she was given $5 to spend as she liked.We went to a yard sale where she found a cage with toys for her pet hampster.
Her first hampster had been eaten by a cat or escaped or something.She found this cage in mint condition with an exercise car and all sorts of other gadgets that make hamsters happy.
I don’t know anything about hampsters, except she has one at her mom’s house, and that is where the new cage wll be going for Lexi to care for.
I wanted her to get a sense of reward with saving.
I think it’s important for kids to know that if you save then you will have the financial freedom to make purchses for enjoyment, as long as the needs are met and a baseline savings is kept.
Lexi needs to keep a minimum of $50 in her account.
This is our deal.
Financial & parenting commentators state that financial education should start as early as six.
Coming from a family who worked hard to ensure I was financially educated, I want to bestow the capability of financial security on Xander and Lex.
The lessons certainly do start early.
X gets a weekly allowance of two dollars for caring for the animals. He may get a raise for brushing Nika. This is in discussions.
He has his own savings account and a goal for his savings: he would like to buy a four wheeler.
This is a tall order for a kid, but he is well on his way.
Alexis hasn’t determined her savings goal yet, but we’ve established boundaries, such as $50.00 must always remain in the account.
As far as Xander, I think we have a little entrepreneur on our hands. It was his idea to do the flea market/yardsale.
He also will babysit pets. When a pet sit is requested, he discusses what is included up front, feedings, brushing, daily walks and exercise, and then sets the fee.
I love it.
Teaching financial responsibility to both Xander and Alexis is a very important goal for me as a parent, especially looking around at the big mess that has been created.
I don’t think this crisis can be solely blamed on my generation. At least a couple generations of mismatched morals and priorities would give rise to a world wide problem of this magnitude.
Jon and I were offered a subprime loan when we were building our house five years ago.
This loan was offered to be sold by Jon’s uncle, who we should have been able to trust that he had our best interest in mind and would not put our livelihood at risk.
We looked at the paperwork together side-by-side with the loan from the Savings bank we had visited.
Interest rates at that point were at historic lows, everywhere. Our mortgage payment would be manageable with a conventional, first time home buyer loan through the Savings Bank.
Jon and I had all ready discussed that we would not take out the entirety of the money that the bank was willing to lend us, and this was what the bank, the institution that has not collapsed and continues to run today, would approve.
The subprime paperwork offered an interest only option. Our first question, “What happens later? You don’t pay the interest forever.”
That’s when we heard the term “balloon payment” for the first time and ran screaming in the other direction.
“Hell, no” we thought, who were these people and why would they offer this to anybody.
If a person does not have the money at the start of the mortgage for a concrete, set monthly payment, it is not likely that their situation will improve so much over a period of a couple years that they will be able to afford a thousand dollar increase.
We certainly didn’t see that in our future, even though we were at our youthful prime, me working as a registered nurse and Jon as an engineer, with only one child and 40 years of heavy duty working in sight.
I also had plans of getting an advanced degree in nursing in the next couple years that would have significantly increased our income, but I didn’t want that eaten up by a mortgage skyrocketing through the atmosphere like a blown balloon let loose.
We were financially aware.
Unfortunately, not everybody had the foresight to see beyond the initial perks of low monthly payments and a huge budget that did not take into account credit history.It also goes without saying, that everybody and their uncle, were selling these predatory mortgages to make a quick buck without moral consideration.
The term is actually “Fiduciary responsibility.” I have heard it referred to as “The “F” word” in “Bank Director” Magazine (I know, I’m a real geek. I read everything I can get my hands on.).
It is the concept that bankers have a moral responsibility, like Doctors who “do no harm,” to oversee their client’s financial livelihood. Bankers have an advanced education and understanding, to exploit this information asymmetry, which is what happened, is not only immoral but predatory and borderline criminal (without the laws to protect the innocent, or ignorant, but “I didn’t know” is never an excuse in a court of law.).
This concept was obviously dragged, beaten, and buried six feet below during the early millennium.
I’m sure this is what has partly given credence to another new movement in investing.
People have the option to invest in “socially aware” funds.
Funds now exist where you only contribute to companies that have policies in line with your personal values.
Our investor in Chief, Pres. Barack and the first lady themselves, hold stakes in socially aware funds.
They do not, however, hold any stocks.
Jon and I were fortunate for a foundation in financial literacy. This is what has saved us. I thank my parents for starting the lessons young.
Now, we’re passing it on.
Those kids will do just about anything for $2!
I love it. They are scrambling, fighting for jobs that pay in quarters (Unfortunately, this sounds like a lot of our men right now who have been laid off).
Nothing is beyond request, wash the windows, scrub the floor, fold the clothes. They’ll do it.
Then, they will save it.
Xander has a head start on Alexis, but Alexis has been diligently aware since Easter.
She managed, somehow, to not purchase a singly object at the flea market last Saturday.
She did manage, however, to scrounge up a bunch of things I was trying to sell that she wanted for her mom’s house.
I said if it was in the flea market pile, she could have it, but as long as it wasn’t going up in her room at our house.
We are now moving on to 529 College Saving Programs.
I recommend all parents stop reading me know and go straight to upromise.com
This site allows you to collect rebates through shopping online. If you sign up for a credit card, that card also will send rebates straight to your upromise account.
Pay that bill every month.
It gets better though, so much better.
This upromise account can be linked to a Vanguard 529.
A 529 is a college savings account that is eligible to be used for a child’s college expenses, such as housing, books, tuition, etc., that is taxed in the student’s income bracket.
Our major financial leaders had to divulge their investment holdings recently and 529s appeared frequently on the list, specifically 529 investment holdings were on the list of our Secretary of the Treasury.
I guess he has kids.
After registering at upromise.com, you can then click the 529 tab and sign up for a Vanguard 529 program with two savings options: one to start an account with a base amount of $250 and another to agree to automatically invest $50 a month from an existing account.
We started Xander’s account years ago, now the goal is to start on for Lexi.
Someday, somehow, we will scrounge together that $250.
After this point, rebate payments are automatic. What is earned is sent directly into the accounts as I specify at the start of the account.
I never have to see anything.
This will hopefully make saving easy, but at the very least, I know I am trying to teach two kids in the world to be financially responsible and spread the “F” term (that’s fiduciary responsibility people).