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."

Get a playlist! Standalone player Get Ringtones

Monday, June 21, 2010

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:
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.
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
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
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.
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:
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.
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.


Anonymous said...

You are awesome Hill ... that was a very moving piece. Thank you for putting it out there for us to read. You make me proud girl!!


linda keenan said...

this is great!! i have to write some stuff then ill think about pimping this all out. i think you have an excellent shot.