This is Where I hurt.
Any suggestions as how to fix mucositis?

OUCH

OOUUUUUUUUUCCCCHHHHHH!!!!
I don't even know what else to say.
I hurt.
My chemo's giving me a ba-donk-a-donk kicking.
I received my vinblastine Thursday, then slept all Friday, and played most of Saturday except for a decent nap, and yesterday I thought I was in the clear.
No such luck.
I had a little nausea and a little fatigue up until then.
My shortness of breath had increased.
Then yesterday chemo's strong arm gave me a beat down.
I hurt so bad.
My head hurts. My jaw hurts. My neck hurts. It hurts all the way through my parotids.
Then every time I eat, the secretions make it worse.
My mouth burns! It burns like I have strep all over.
And I was worried about losing that steroid weight.
Constant sips of water help.
Lots and lots of morphine help (and by lots I mean the dose could probably control the pain of all you readers).
I called the doctor for a prescription for my mucositis and talked to a wonderful young woman who prescribed me BLM.
That's benadryl, lidocaine, and mylanta.
It helps a little.
It won't get me eating. I'm trying to take bites of bread right now.
I'm going to try ice cream in a second. That worked last night.
I also slept with ice wrapped around my face.
Maybe I should have been less active on Saturday. It was skills and picture day for the soccer team. I could have taken it easier, because now I am MISERABLE.
I am also onmy way to the Dept. of Health's stakeholder meeting.
I knew it was a sign when I had trouble getting a ride.
It's an important one where we actually brainstorm a concept to turn into a reality.
Don't want to miss it, but doubt I'll make it the day before heading to Dartmouth in tears from the pain.

MINOR EMERGENCY

I NEED HELP!!!
MINOR EMERGENCY HERE PEOPLE......
I haven't been able to find someone to drive me to my technology meeting tomorrow.
I need transportation pretty frequently and don't like to ask for non-treatment related favors,
But tomorrow the Health Exchange Information Stakeholder committee is getting together to conceptualize the actual site!!!!
It's going to be a brainstorming session where we all throw out our ideas of what we'd like to see and how to see it function.
I could call in, but
I think it's important to be there in person to get the project experience.
Anyone?. .. . . . . . Anyone?
I prayed to God last night and said if this was really a part of my purpose he'd find a way to get me there.
I hope he does.
Feel free to (or PLEASE,PLEASE,PLEASE) type in suggestions of what you'd like to see in an electronic healthcare communications system. Hear the sky is the limit and if you don't dream it up now, it may never be.
Want to meet face to face to have a consultation about a patient with a specialist across the nation?
Do you want to be able to view innovative study findings from Stanford at Harvard as the study progresses?
Do you want to have Live Rounds from the comfort of your office with practitioners from across the country present?

It is possible. Today it all sounds like some cyberbot alternate universe I dreamt up while lying in my hospital bed,  but eventually it will be the accept, unquestioned, reality.

What everyone, unanimously, wants first is to be able to access any person's medical record, anywhere, in case of an emergency.
If you are vacationing by yourself in TX and you live in NH there needs to be a system where on arrival at the hospital via ambulance, or even in the ambulance via cell phone application, professionals can search a person's identifying information and receive basic, pertinent, health care information.

Emergency workers need to know: Name, Age, Height, Weight, Sex, Medical History, Surgeries, Previous Acute Conditions, Chronic Conditions, All medications taken, including as needed medications and allergies. We want to know who to contact and a durable power of attorney. Insurance information needs to be there. A complete EMR would be perfect.

The healthcare is all ready an intertwining web of communication, just now there is no formal trail. Since there is no formal process of communication in health care, as there is between departments in manufacturing corporations, important information, or even patient's themselves, get lost in the shuffle.

This would make communication processes more efficient. According to NEHEN, an existing Health Care Exchange Network, it would o reduce the number of customer service representatives answering questions like “Is this patient eligible for care?” or “What is the status of my claim? Is it paid yet?” The shifting of manual processes to electronic processes not only improves customer satisfaction but also allows health plans to reallocate resources from administration to medical care. NEHEN gives health plans real cost savings over paper-based processes and less claims rework.


This would also be used as an on-line program documenting the patient's record. At first we'd start the data entry of patients records, then then they'd be updated with each visit, where ever with who ever.
I'm feeling a little like a commercial. I'll leave now.

Hey All Facebookers!


It's time to join my cause!! 
Yes, I'm going all out trying to get ABC's and Extreme Make Over Home Editions' attention.
Norris Cotton needs a Hillary's House and they need it now!
No more exhausting trips for sick cancer patients. 
Let's make them a place to stay.
To help with recruiting this cause, go to http://www.causes.com/causes/499245?m=35a6f21d and invite as many people as allowed (facebook stops you at 75 people daily).
I'm happy to say that since this was put up on Thursday we've had 142 recruits! I'd like thousands and thousands.
We want your support.

Ms. (Temporary) Ba-donk-a-donk

I thought about throwing out the glass baking dish from dinner with the chicken remnants in it last night instead of cleaning it.

That's how tired I was.

Luckily, J was there to save our bakeware.

I haven't even started chemo yet, but at the end of the day I'm useless. 

It's been like that for a long time now.

I'm not going to lie.

But I've had it. 

My big fat face and juicy ass.... ets are driving me crazy. 

I stand in front of the mirror and suck in my cheeks or squish them in hoping they'll stay where they rightfully belong.

 I want my damn face back!!!

It's been hijacked!

 But who knows when that is going to happen. 

If I had my face, I could deal with the curves. 

I don't think I look terrible as a big girl. 

I think I'm kinda cute. I'm rockin the look, but I'm thinking of it as an experience.

 I'm just vacationing in the big girl club, just a tourist. 

My body has been hijacked by steroids.

 I'm thinking of it like pregnancy. 

A year of bodily chaos for years of joy. 

That's what I'm trying to convince myself. 

But now I'm taking only 5mg of pred with no sign of dropping below 155lbs. And supposedly, I could have adrenal insufficiency from therapy, which would make me THIN!! 

The same with lung disease. That's supposed to make me THIN.

 I also do excercise, a little less than before, but I walk a half mile daily. It's done nothing to firm my ba-donk-a-donk.

 Ugh. I just hope it's temporary.

I won't even go into how devastating it is that I can't work my butt off, literally, by playing soccer. That's a whole other posting with tears involved.

Damn lungs. Let's pray they keep holding up.

I have my first real business teleconference today ever! 

Yes, in this instance, I'm a newbie. I'm a virgin. 

I love the idea of having a business meeting in my pjs. 

 During our convo, I'll have the berry attached until I get in for pharesis.

 I'm choosing to concentrate on this instead of he impending therapy.

 It's said helping others is a good way to feel better about yourself and increase your energy. 

It really does work. 

You all should try it. 

Start by copying and pasting my Extreme Make Over  application into word, printing out an application from the link, and nominating the Ford Fam. 

That can be your good deed.

 Let me know how great you feel afterwards.

How many more treatments until I get my super powers, Doc?

First Day Anxiety

I start chemo tomorrow.

It doesn't matter how long I've been doing this, how many chemotherapy regimens I've tried, I still get anxious before starting a new therapy.
I now I've had vinblastine before.
I know vinblastine combined with 3 others chemos did little to hurt me.
But that was four years ago.
That was when I started treatment.
I was coming out of the gate as a fresh faced, healthy, athletic twenty-three year old.
The outcome may have been different over the years had I not appeared for treatment in perfect health.
I worry that I'll have an allergic reaction that won't be remedied in time.
I've had something like this happen before.
I started to tingle. I started to see stars. Then I got really hot and had trouble breathing.
Luckily, I had someone sitting with me.
I'm fortunate that I have family and loved ones who insist on caring for me.
I know I'm stubborn and try to enforce my independence like a rebellious teenager, but it is probably better.
This will probably be the one and only time I admit that.
Thanks everyone.
I'm doing what I do best when I'm anxious.
I'm preparing.
I'm cleaning and organizing to my ability.
Weds. are usually my favorite day. It's a favorite because my aunt comes to clean the house.
It's a wonderful feeling opening the door to a sparkling home like your fairy God Mother arrived while you were away.
I'm so lucky to have her do this for us. It's been a blessing.
It gave me the energy to go grocery shopping real quick yesterday to buy chemo food.
I take my food really seriously, and more so seriously during treatment.
I made myself a gigantic fruit salad.
Since 2006 I've craved fruit salads.
Do you know how labor intensive making a damn fruit salad is? It's exhausting. The only time I get it is if someone else makes it for me, but it's always well worth the wait having al my favorite things in one place.
Luckily, when I have chemo, I usually crave really healthy food.
Hopefully I can get back on my health food kick.
I bought coconut water.
It's all the rage now. It contains 5 electrolytes and all-natural sugars while gatorade only has 2 and loads of sugar.
I'm paying a $1 a can for the health benefits, but it's also really tasty. If you're interested, coconut water can be found in health food stores or the spanish foods section of any grocery store.
I also bought pina colada mix. I'm going to be making some pina colada smoothies so I can pretend I'm really partying when I'm wired for sound.
This all helps me relax just a little.

I also distract myself.
We coached soccer last night and the cousins spent the night.
We're going out today to see Marmaduke, by special request from Alexis.
I also found out, for all you locals reading, that Toy Story 3 is in 3D is playing in Hanover!
No need to travel to Concord or Hookset.
J and I watched an end-of-the-world, doomsday movie last night.
Those movies, in a terrible morbid way, make me feel better.
It was called "The Book of Eli" and took place in a post-apocalyptic world.
I'm not interested in being around in a world that's terrible and dreary like these types of movies portray.
And you know, they never make prediction of the future in movies that the world is going to be a shining happy place.
It's always we've destroyed our environment and then ourselves and a few good, strong survived but more evil that try to mug, rob, kill, and eat the surviving good people.
Once, I'd like to see the other version.
J says the doomsday versions are more believable and if it's a shining happy prediction of the future, it's probably a comedy.
I think I agree.
I also have my first teleconference as a stakeholder for the Health Initiative tomorrow.
I'll prep more tonight.
I've never had a teleconference meeting before.
I'm feeling a little big time, but I know I'm going to be lugging my blackberry from my house to the car to the hospital while getting hooked up for photopheresis.
I can work it.
As a final thought, please keep my brother-in-law and sister in your prayers. They've both contracted awful cases of lyme disease that has left them exhaustd, achy, and debilitated.

Something to think about. . .

I'm ok with law enforcement.

 I can be a supporter.

 X wants to be a k9 cop and has since he went semi-missing at 5, but some of the recent arrest mishaps have me rethinking who I'm supporting. 

On Sun. Springfield Vt responders came up on a car stopped on I-91. The driver was asleep and unresponsive. They went to drag the man out of the vehicle and were surprised when the mans foot went off the break and the car resumed driving!! 

Hmmm.... Didn't anybody think of putting that car in park? 

Here is another one from around the way, after a landlord returned home to discover his renters had 10ft pot plants in his trailer he called the cops, who then called the renter to the scene. The renter, seeing he was busted, told the cop he just had to deliver his car to a friend before heading off to jail....... And the cop let him go!!

 I guess it never crossed his mind that maybe the pot growing drug dealing man could lie. He did and who knows where he is now. 

Moving on..... 

J and I have found a new subject to bond over: our forever growing bellies. 

It doesn't matter how healthy our diet is or how little we eat, our bellies just keep getting bigger. 

I guess that's the nature of the beast with an inflammatory bowel disease that causes constant bloating and a tumor growing in your ab. 

We're both pretty uncomfortable. 

We originally had fun growing but now we want relief. 

Thank goodness x is 7. 

I'm loving this age. 

He's old enough to play by himself and explore the property giving mom and dad a break from his energy.

Not that I recommend this, but in a pinch, I'm now able to force him to stay inside the house and snooze.

One eye open of course.

But he knows what I need.

Extreme MakeOver Home Edition Application

Linda, Readers, YES, I did actually apply to Extreme MakeOver Home Edition. 

I hate to admit when I engage in craziness, but I'd watched this show week after week thinking my story was deserving, I just don't actually need a house.

I know lots of people who need housing though.

I applied to ask for a "Hillary's House" like Dartmouth Medical has David's House where people can stay while their family members undergo treatment or adult patients of Norris Cotton can while they're receiving treatment or recovering while getting frequent check-ups.

The traveling is exhausting and counter productive to healing. After my BMT at Boston, I was able to stay at the Best Western for $39 nightly to remain in the area. Unfortunately, DHMC offers nothing like this. The Marriott across the street has a rate of $129 nightly but a maximum time frame of seven days.

Cross your fingers, and maybe they'll work their magic.

I'm cutting and pasting the application.  If anybody feels like resending it and nominating The Ford Family (HINT HINT), you can feel free to do so. Here is the link to print out the application:

 http://abc.go.com/shows/extreme-makeover-home-edition/apply

MAYBE, even one of you tech savvy readers could start a facebook cause/petition. Call it: Extreme MakeOver Make "Hillary's House." We could see how many people join the cause. Maybe I could get Betty White numbers. 

Question 1 Volunteer Work & Community Service

I said when I was diagnosed with Hodgkin’s Lymphoma that I was
going to use my disease for “everything it was worth,” and to do that, through
my battle, I’ve volunteered using my favorite pass times: writing, nursing, and
sports.  Now I am writing to ask for help with the biggest volunteer effort of my life: building a home for cancer patients and their families to stay and recover during and after treatment at Norris Cotton Cancer Center in Lebanon, NH.










Coaching
Sports teach so much more than moves and competition and having
my family coach me was one of my favorite childhood memories. I wanted our son,
Xander, to have the same stability and fond memories I did despite my husband
and my illnesses (crohn’s disease and Hodgkin’s lymphoma respectively). 
I wanted to give him something he could depend on. 
Jon and I began coaching our niece, Alexis, in
basketball when she entered first grade. She lives with us off and on when life
with her mother becomes unstable, such as when they are between housing.
ach her through the Claremont
Community Center until third grade.We continued to co
Her third grade year, the year I had my second bone
marrow transplant, Jon coached both Xander’s first and second grade basketball
and Alexis’s third grade team.
Every year since Xander was four years old my father
(Vic), Jon, and I have 

coached soccer in both the summer and fall. We’ve followed
Xander through out his age groups.
When we became too sick to coach during the season, I
pulled "the cancer card" and guilted other parents into covering. 
Baldies’ Blog
REAL WOMEN ARE BALD!
www.baldiesblog.blogspot.com
 
After discovering my cancer would likely continue to
reoccur and that I would probably never return to nursing, I decided to make
advocating my new job.
 I started
writing "Baldies' Blog" in August 2008 at 25 years old.  Its address is
www.baldiesblog.blogspot.com
I hoped to give people insight into the life of a person
battling cancer. In doing so I hoped to make people more comfortable with
addressing the disease and supporting others through honesty and transparency.
 I wanted to
take the fear of the unknown away from other patients through being transparent
about my own battle.
 I wanted to
change the face of cancer so people would pay attention. I wanted to this by
showing cancer is a disease that even if it can't be beaten can be survived. 
I also
wanted to be reassured that no person would struggle and suffer as badly as I
have ever again, and I hoped that by being vocal about many of the injustices I
have suffered at the hands of the current medical system, such as having care
denied or delayed due to insurance rejections, being double/triple billed for
single procedures, being down right lost between providers that people would
see the need for reform and no longer fear the change.
 to realize they weren’t alone in their
struggles and that if you have become bankrupt after an illness, it’s not
really your fault. The system is designed to break you, and if I couldn’t survive
and thrive, a 23year old RN who graduated valedictorian of her bachelors degree
class in three years who had every insurance available, then nobody could.I wanted people
After a period of isolation, I took the leap from
advocating in the virtual world to advocating in the real world, specifically
for increased transparency in health care through technology, but also for
health care reform to protect patients who can not protect themselves.
Advocating
I have volunteered with The American Cancer Society, NH Citizens Health Alliance, and spoken on behalf of patients everywhere advocating for healthcare reform, specifically to increase the cigarette tax in NH, to create an on-line comparison website to inform consumers of hospital and insurance
costs, and to form a commission to study the causes of rapidly inflating
healthcare costs. I assisted in saving NH from cutting its Catastrophic Illness
Insurance program, advocated for an increase in the cigarette tax, and
My testimony, hopefully, helped influence the decision
to create an on-line insurance comparison website: http://www.nhhealthcost.org/
My senate testimonies can be read from Baldies’ Blog if
you search “senate” from the sidebar.
NH Health Information Exchange Planning and
Implementation

I am currently assigned to NH Dept. of Health’s Health
Information and Emerging Technology and Implementation Committee.
We are working to create NH’s (and possibly New Englands
or even the counties’) on-line electronic medical record database.  
I am the sole participating patient working on the
Business and Technology subgroup. I am developing the ideas and processes to develop
the technology medicine uses tomorrow. 
I was assigned to the stakeholders group after sending a
proposed idea through NH’s senate to work as a case manager among patients with
multiple doctors. My idea “patients as partners” can be expanded to be America’s
online medical record system. It is certain that portions of my idea will be
due to my involvement. I was inspired to devise this plan after I was lost
between providers to Dana Farber for 6 weeks while awaiting treatment. I was
treated like an idiot, made to cry, and completely forgotten about until I had
a prominent oncologist friend call and ruffle some feathers.
I received four calls of apologies the next day.
My transplant office thought the research office was
going to call. The research office had thought the transplant office was going
to call. I had never heard of or met anybody from the research off, and the
transplant office couldn’t understand why I wouldn’t give up calling them
because I just wasn’t there problem.
A six week delay for small cell lung cancer would be
fatal. 
I don’t want this to ever happen again. I’m doing
everything I can to stop it. It’s still probably not enough.
 


Recently, I’ve started working on a project called
“Cancervivor Arts.”
 Hopefully this will blossom into a site where cancer
patients can sell their goods online to earn money during their treatments,
much like ETSY helps artists sell their goods.
Many of us who have become debilitated by disease create
beautiful pieces of art as hobbies, but have no where to sell or give them.
Selling items helps ease the burden of our bills while
giving us a therapeutic outlet and helping us maintain a sense of self worth
and productivity.
I hope to collaborate with existing artistic endeavors at Dartmouth to use this as a source of raising and maintaining funds for their complementary programs and easing the fiancial burden of patients.

All these activities have been since my diagnosis with lymphoma in 2006.
Prior to that I was in phi beta kappa nursing honor society and sigma theta tau
Catholic Honor Society. Baldies’ Blog has been ranked among top 40 blogs online
and in the top 10 cancer blogs according to The American Cancer Society. 
Jon and I have continued coaching soccer and basketball
through both of our illnesses (my cancer treatment, his crohn's disease
treatment and even a torn achilles heal). 
Proudest Achievements
 
My family’s proudest achievement is staying together and
continuing to love each other through all our obstacles. We are also proud that
we can continue to support and positively contribute to the community.
 After years of
battling for my life, I know what my priorities are. Having a supportive,
intact family is my proudest achievement.
Being able to turn my disease and suffering into
something that can positively benefit others is also a proud achievement.
I don’t want anyone, anywhere, ever to suffer the way we
have. My writing and advocacy has helped take steps towards this goal, and
that’s among one of my, personal, proudest achievements.
Of course, writing one of the top ten cancer resources
according to The American Cancer Society and participating in NH’s Department
of Health’s Health Information Exchange Planning and Implementation Committee as
a patient ranks a close.
How would we give back to the Community:
This is my favorite question.
Our community has given us so much, I know we will never
be able to pay everyone back. I can only try to pay it forward in hopes that no
person has to suffer and struggle the way my family has. I have big hopes and
dreams about how this can be accomplished.
It is my life dream to provide a safe place for patients to stay
while they are undergoing treatment for cancer, specifically bone marrow
transplants. 
I’m applying to Extreme Makeover Home Edition not for my
own home, but to create a home-away-from-home for patients at Norris Cotton
Cancer Center.
 
I know I will never be able to do this myself. I worry
even if I am selected I won't be around to see my dream come true. 
My prognosis is poor with less than a 5% 5 year survival
rate for my bronchiolitis obliterans, which I suffer as a side effect of my
second bone marrow transplant. A diagnosis of pulmonary fibrosis generally
comes with a prognosis of less than a year.
I've been fortunate to have the support to leave my home
and move to Boston for my bone marrow transplant. Fundraisers gave me the money
to live relatively stress free at a nearby hotel. Endowments made the hotel's
nightly price affordable. 
I know not every patient will receive a fundraiser. I
know Dartmouth's Norris Cotton Cancer Center does not have the endowments to
make living in a hotel affordable. The Marriot Courtyard across the street
gives patient rates, the lowest being $129/nightly. The longest stay allowed is
7 days.
While undergoing my transplant in Boston, I spent 6
weeks living in a Best Western at a rate of $39/nightly, which was both
affordable and convenient.
 Children's
Hospital at Dartmouth (CHaD), which has been featured on your show, has David's
House where children's families can stay during treatment. 
 
There is nothing for the family of cancer patients who
often travel hours to the hospital and are hospitalized for weeks on end or
have daily treatment appointments. I have spent over nine months as an
inpatient at Norris Cotton.
Even traveling an hour round trip is burdensome for my
family, but the company does wonders to improve my spirit. If the burden of
travel and housing was lifted, I know patients would experience better
outcomes. 
Studies done with couples undergoing in vitro
fertilization via a destination vacation in Barbados experience an 86 percent
success rate in vs. a 42 percent success rate when under going the same
procedure at home surrounded by their daily stresses. 
I think a similar positive effect, i.e. improvement of
transplantation outcomes and quality of life, would happen if the cancer
community had a place to stay while being treated.  
It is my life dream to provide a safe place for patients
to stay while they are undergoing treatment for cancer, specifically bone
marrow transplants. 
Other major cancer centers have housing through the
American Cancer Society that take into account bone marrow transplant patient's
special needs. 
Several small condo like rooms with a queen size bed,
twin size bed, full bathroom, and kitchenette would be needed for transplanters.
Rooms with a shared bathroom or kitchen could house
other less compromised patients. I have been so fortunate to live in my
beautiful home. 
Having a relaxing safe place to return to has helped
keep me alive. 
I have a home that's beautiful. I do not need an extreme
makeover. 
I would love to have "Hillary's House" built
instead of refinishing my own to pay forward what I have been given. 
I would appreciate having this done in my honor before
it has to be done in my memory. My cancer will likely keep reoccurring. 
I am scheduled to begin another chemotherapy regimen
within the next couple weeks in hopes of “gently” sending my cancer back into
remission. I will undergo chemotherapy alongside my current photopheresis
treatment for my lungs.
There is not much I can do about that but keep fighting
and buying time in hopes one day a miracle or cure will come. 
I don’t want my experience to be in vain. I want to use
my experience to make the same crisis easier for others. Building a place for
patients to stay during their cancer treatment is my dream to give back to the
community. I think I know who could make this happen for a young, sick woman. I
hope you agree. 
If, maybe, our house could get a “mini-makeover” we need
a garage and a handicap accessible office. I’d love for my husband and son to
have “man space” where they can escape.
Do you have any
debt other than a mortgage:
HA! Yes, of course, I call them “student loans.” 
First is a loan from Bank of America at 9.9% or $394
monthly payment we used to consolidate debt early in my disease before we
realized not to pay everything the hospital bills us for.
We have medical debt, the amount of which is currently
unknown.
My Aunt advocates on my behalf and everything I am
billed goes directly “under review.”
We owe on two cars with balances about $15,000 and
$25,000.
We have probably paid off over $50,000 in debt over the
past four years.
We pay an average of $20,000 yearly in medical costs.





Naively at the beginning of my treatment Jon would pay
bills immediately via credit card. Then in Feb. 2007, while I was in a coma
after suffering respiratory failure, Reliance Standard, my Disability Insurance
Co., stated they had over paid me and came to collect $7,000. Jon placed this
on a credit card.
They are again trying to claim they have been overpaying
$566 monthly for the past 4.5 years.
I am not sending them the evidence they need to confirm
this. It is confidential.
If I did send them the paperwork, we would owe over
$25,000 that they claim they overpaid.
I called Congressman Paul Hodes office to see if this
practice was legal since they are a disability insurance company that is
supposed to protect me.
This practice is legal. If they find they made the
mistake of overpaying me for 4.5 years, I owe them.
That sounds oppressive, wrong, and down right nasty to
me.
Cars:
Jeep Compass 2007
Nissan Armada 2007
No Military Experience
In the event we are selected we will be able to provide
W2s and tax returns.
Summary of My
Family’s Current Situation. How it affects housing. What makes us deserving.
What makes us unique.
I have started to call myself “Murphy” because whatever bad that
could possibly happen to me will and it will happen at the worst possible time
in the worst possible way.
If we didn’t have bad luck, it wouldn’t have any at all.
After living a wonderful fairytale life growing up,
getting married to my husband, having a strong healthy son, graduating from
nursing school in 2004, and building a career and home in the town I grew up
in, I was diagnosed with Hodgkin’s Lymphoma in 2006.
Our son, Xander, had turned three a month earlier. He
has never known a mom without cancer.
My husband had been diagnosed with Crohn’s disease in
2004, and while I was being treated for my cancer the stress caused terrible
flare-ups.
To quickly review my medical history: Diagnosed
Hodgkin’s lymphoma April 2006, 5/06 ABVD, 8/06 Rapid Reoccurrence Autologous
transplant recommended, 1/07 Auto bone marrow transplant, 7/07 Standard
radiation treatment, 8/07 Lymphoma recurrence, Sept 2007 Radiation Therapy,
October 2007 Hodgkin’s back, Nov 2007- more radiation, March 2008- Hodgkin’s
returned a second bone marrow transplant is recommended. July 2008 I start
treatment at Dana Farber in Boston.
In July 2008 I moved to Boston to undergo a clinical
trial at Dana Farber Cancer Institute to get into remission prior to my second
bone marrow transplant.
That same week my husband Jon underwent bowel resection
surgery at Dartmouth, 200 miles away. The constant flare-ups had scarred his
bowel beyond repair. 
My sister cared for me. Jon fended mostly for himself. 
Our son stayed with my parents while we recovered.
Alexis returned to her mother and bounced between living
situations.
The most difficult part of being sick is the inability
to provide the love and stability I had envisioned giving the children in my life. It always hurts when I have to miss an event, can’t coach a team, or chaperone a field trip. It’s a wound that never heals. Coping never gets easier. I’m saddest not thinking that this disease may end my life but that it will end my ability to influence and care for my loved ones, especially Xander and Alexis.
I am fortunate to have survived as long as I have and
maintained the quality of life I know when I am no longer here that Xander will
be fine, loved, and in good hands.
My heart breaks, I’m crying now, at the thought that I
will no longer to provide for Alexis at all. 
her that life will be better than
it is now, that someday she will be an adult, successful, and will overcome the
difficulties of her childhood.I have tried so hard to assure 
I dreamed after I graduated college that we would play a
large role in her life, providing structure and safety until she was grown,
providing for her physically, emotionally, and helping her off to college. 
Unfortunately, the more sick I become, the less I can
care for her. If I was able, she would be with us the majority of the time. I
often take her even when I know I am unable to care for her because I
understand that my home on the worst day is safer than her home on its best.
Luckily, she still has plans for her future. Now ten, She dreams
of being a vet and opening her own clinic with a friend. I know we won’t be
able to contribute to college like we thought we would, and I pray she still
remains in school, sticking to her goals, even without someone constantly
reminding her that they believe she can do anything she puts her mind to. 
 During our
simultaneous battles, Xander has struggled with constant ear three surgeries
for tube placements, and adenoidectomy and tonsillectomy in hopes his ailments
will not delay his learning.  He
has also been diagnosed with dyslexia and though undiagnosed likely has
attention deficit hyperactivity disorder (ADHD).
In the two years since both my cancer and his Crohn’s have
returned. Xander continues to struggle with depression and anxiety over his
sick parents the best he can.
I developed Graft vs. Host disease as a side effect from
my second transplant. This attacked my lungs giving me “bronchiolitis
obliterans,” a disease more lethal and scary than the cancer itself.
I spent fall 2009 hospitalized fighting for my
respiratory health.
I am currently undergoing photopheresis to maintain my
lung function. This requires my blood be removed twice weekly and treated with
a drug called “uvidex,” which alters the process of the white blood cells in
hopes that they will n longer attack my organs.
What we’ve had going for us through these catastrophes
has always been a safe place to stay filled with love and support from family
and friends. Without these things, I would have died years ago.
I know many patients who struggle to travel from treatment site
to treatment site, paying high costs not only for their care but for their
travel, taking buses, planes, subways, etc. to their chemotherapy treatment
when they are supposed to be in isolation.
I want these people to have the same fighting chance I
do. I want them to have a secure, safe place to recover that understands the
unique needs of cancer patients and their families and accommodates them, such
as the need for cleanliness, dietary restrictions, and isolation with
stimulation much like The American Cancer Societies Hope Houses or The Best
Western on Longwood Ave. in Boston. 
Not having a home, a safe place for cancer patients to
recover, like the one I dream of, is limiting people’s chances of survival. Not
only would building the facility be a wonderful addition to the community, but
it would save lives. 
It would also be a dream come true for me. 
I never want anybody else to suffer the way I have, to
cry the way I have cried, to fear the way I have feared. Removing the one
monumental stress of travel or where to stay during treatment by building a
temporary home for patients during treatment would make this dream come true.
Why does the home
need a make-over and what are the five top repairs?









This is David’s House, created as the dream of a little boy with
leukemia who passed away at the age of five in 1984. David always begged for
his parents to take his new friends home with him to provide a safe place with
security during their illness. Today David’s house has served over 10,000
families.
A home for adult cancer patients needs to exist! It needs to be built with the five top special considerations
being location, as in proximity to
the hospital, safety, handicap accessibility, functionality, and comfort.
I own property located in Charlestown NH where the home
could be located; however, it’s quite a drive from the hospital. I would love
for the site to be more convenient. 
Safety is of utmost importance for people
recovering with compromised immune systems. Special considerations need to be
made to prevent any infections, possibly anti-bacterial silestone countertops,
an air filtration system or negative pressure room.
It goes without saying that it needs to be handicapped accessible but also while
efficiently meeting the needs of high acuity patients, such as organized storage for medications or
medical supplies individual kitchenettes and bathrooms. Individual living areas
for bone marrow transplant patients need to contain a TV, DVD, Double/Queen bed
and twin bed and Kitchenette area with microwave.  They don’t have to be large, but I’d love to be able to
accommodate 8 families at a time, if not more.
Last but not least needed is comfort. I’d like a home away from home where patients and families
can pretend they are on vacation and to see it as an oasis so people don’t feel
like they are away for treatment.  
Norris Cotton has great complementary care services such
as an Artist in Residence and on-site masseuses and reiki practitioners. It’d
be great if there was a common area where these people could practice to
embrace the holistic aspect of healing.
If you are feeling generous, our home desperately needs some
help.  We do have mold issues along
the backside of our home where the walk out cellar is. This may be taken care
of before you review this. Our house is a gorgeous, nearly new two story cape. 
Unfortunately, I can’t utilize anything but the first
floor because of my handicap.
A garage would be wonderful. I’m unable to shovel off
snow in the winter due to my lungs. Luckily, Xander has been really helpful. My
husbands big dream is to have a gigantic garage where he can also have a work
area, but I’d take anything that covers my car with an attached mudroom.
We’re lucky we have one but 4x6 doesn’t cut it for all
our winter/sports gear and my oxygen.
We built our home with other plans in mind and it does
not fully function for me since I’m unable to use anything other than the first
floor.  I’d love an office/
possible temporary room for Xander until he gets older and will move upstairs.
We all live in the same bedroom even though we have four
bedrooms since I’m unable to climb stairs to tuck him in or comfort him during
the night.
When Lexi is with us she also stays in our room though
they both have bedrooms.
I’d love for Jon to have a “man space” where he can go
to relax, maybe a workshop. He loves to create as a hobby but hasn’t been able
to. He’s sacrificed so much caring for me, Xander and Lexi. He certainly
deserves to be taken care of.

Tweets From the Week

My blackberry wouldn't allow me to post while on vacation, but I didn't stop writing. Here are some quick thoughts that I'll call tweets from the week.

I don't feel like myself. I haven't for a while. 

I hope I'm not forgetting who I am.

 It was easier through the first two bmts to keep my sense of humor. 

I'm having trouble finding the silliness in my lungs failing.

 I love laughing. I love bursting into hysterical contagious giggles. 

It's been a while since that happened. 

Day-to-day I feel like I have to maintain emotional strength so my family won't break.

 I don't feel like I can have a single bad day. 

If I do, someone just hops on the band wagon.

 I want to vent in peace. I want the freedom to be angry and cynicle without someone screaming and hollering about how it's right or wrong or so much worse on them.

 I'd just like my feelings to be respected and acknowledged as okay, as normal. 

Feelings, like pain, is whatever the person enduring the experience says it is. 

I do want to be positive and happy and funny through this. 

It's important to me.

 People without sense of humors scare me.

 They rank right up there with serial killers and pediatric urologists. 

but I don't want to have to be that all the time. 

I still want it to be ok to be me. 

Would you rather make a historical lasting difference in society but live unknown through out your life or would you prefer 15 min. of infamy while alive? 

I want to know who, exactly, get's to decide the difference between art and scribbles?  And if I teach my now second grader (tear) the phrase "pollack splatter" or "pollackesque" would he get away with scribbling in art class?  At 18 m I matted and framed his first finger paintings and have since had them confused with high end art. I guess art mimics life hear, the image is all in how it is framed..... Or treated.... Or respected.                                  

I've been threatened. 

Threatened by my hematologist with surgery and needles again. 

If I don't drink and drink and drink to keep the fluids flowing I may need a stent to keep the passageway open. 

A tumor near the kidney is threatening to obstruct the ureter. 

 Guess who is drinking?  Guess who knows she may still need it despite drinking?

 No amount of fluids are going to slow tumor growth.     

  I start chemo next thursday.

  Thursdays will be treatment days with pheresis in the am and chemo in the pm with an appt in the middle.                  

 We're in dc now and off to check out the zoo.

 We've been watching animal planet to prep.

 I walked two miles today!!!! 

Not all by choice. Some was dragged out of my by misdirection. 

I won't you was leading the pack.

 Walking from the spy museum to the capital I got exhausted on the wrong side of the building. 

We hopped in a cab only to get ripped off by the driver. 

But j won't refuse to pay $7 for half a block ride and he's in charge of paying. 

That man would have gotten the 3.50 base fare and a lecture on lying and taking advantage of others from me.

 On those lines, dc is ok to get around in a wheel chair but I'm shocked at peoples rudeness. 

People still cut me in line or race to beat me to the elevator because it looks a little full. As if our lives need to be made more difficult. 

I wonder if the people making history know what they are doing when the do it or if a true historical event occurs naturally in the context of everyday living. 

Did florence nightingale know she was changing the face of nursing when she brought clinics to front lines or tracked cholera outbreaks alongside river flow patterns?

 I'm pretty confident rosa parks didn't think "hey, I'm making history today." When she refused to give up her seat. 

I can only imagine what was going through her head. 

If I could be remembered, if I could carve out a portion of history, I'd like to be remembered as a nurse patient advocate who blurred the boundaries btwen providers and patients in search of a more transparent, holistic care system resulting in better outcomes. I want our current clinic/hospital setting one day to be so archaic we're amazed it was ever used, replaced with a spa, vacation like atmosphere that promotes healing by taking into consideration neurological and psychological aspects of healing.

 Germany's clinics are basically spas, coming all inclusive with healthy meal planning service and in room massages.

 Barbados "get away" in vitro package is 42 percent more likely to result in conception. Could a "get away transplant" result in better outcomes too? 

I want education to occur in context where ailments will happen. 

Health care is trending towards this. It's also trending towards an outcome based reimbursement rewards system. 

If this occurs, we'll see less in patient care, more convenient hours of treatment, 3-D educational models that will take into consideration the stressors of disease alongside different learning types. 

Health care will finally embrace the person as a whole and understand that each organ system does not work independently and should not be treated as such, but is a part of a whole dynamic ecosystem that must be maintained collaboratively in union including the exterior environment and how it affects the dynamics within a person not only physically but neurologically and psychologically, two aspects of holistic care that we've barely brushed the surface of to harness the healing power they hold. 

I'm so lucky.

X has turned into such a little man.

He's spent the vacation wrangling with whether to run from exhibit to exhibit or push me around in my chair.

I have to tell him to leave my side and go enjoy.

He's actually listening to some of the readings and learning.

I thought the zoo would be the big event, but the spy museum ranked right up there.

The following morning at breakfast he was trying to pick out who, if anybody, could be a spy in the room.

But that wasn't even the final highlight.

He drank in the information at The Natural History Museum like an alcoholic. He just couldn't get enough of the mammals, then the reptiles, then the dinosaurs, and finally the gems.

I remember the sinking feeling I had as a child looking at all the dead animals. He didn't get any of that quesiness. He just thought they looked cool and kept snapping away.

We got to see a show on Dinosaurs in the IMAX in 3-D.

Had we stayed another night we would have come back to watch avatar.

We're all ready making a special date to go see Avatar The last Air Bender in Hookset in 3-D.

It's one of the boys favorites.

I'm not sure what he'll say was the best part, but I'm pretty sure the pool ranks up there.

Everyday after his swim he'd come back to the hotel room (I would nap while he swam) and report on the friends he had made.

He made a new one everyday.

The last day he made 12.

I guess we don't have to worry about him socializing. He seems to pick up fiends every where he goes, just like his mom used to.