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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Friday, July 31, 2009

Everyone Loves a Green Girl

Driving down to Boston yesterday we knew we were in trouble, we knew we had to prepare for traffic, long lines, and wait times: the Red Sox were in town.

Boston transforms from an easy going semi-city to a city full of raucous partiers squashed into too little space on game days.

It’s estimated if 40,000 people go to the green monster for the game, there are 20,000 sitting around at the nearby sports bars watching.

Red Sox fans are infamous for their celebrating.

We left earlier than usual knowing they were in town.

I threw on my “Everybody Loves a Green Girl” shirt and sweatpants for my long, comfortable ride.

There was traffic, but it turns out it wasn’t standstill for tens of miles as we’ve experienced before.

It gave me just enough time to look around Boston with the fresh eyes of a tourist after traveling the same route for over a year now and recognizing: EVERYTHING IS GREEN!

Yes, Everything.

They have the Celtics logo of course.

But the green extended to everything. The benches were green. The poles were green, the fences, the guardrails, and the trash cans. All were green, green, green.

Everywhere I looked. There were building facades that were green. Roofs that were green. All the signs were green.

OF course, who could leave out Fenway, Boston’s “Green Monster.”

How could I have missed this? Green is everywhere.

Boston is probably the nation’s “Greenest City.”

Thank goodness I was hollering loud and proud across my shirt that I was a “green girl” or I may have been ejected from the city.

Bostonians take their sports seriously.

I don’t blame them.

Boston is the only city I am aware of where sports assists in funding the medical system.

To dislike the Red Sox, Celtics, Bruins, or Patriots is like spitting on all the wonderful hospitals and technology in the area.

This is the primary reason my love of B-town sports is growing.

I was in Boston yesterday for a reason though, and it wasn’t to see the Red Sox.

I am sure you are all waiting in anticipation for the big news.

My cancer has returned.

This is a definite.

The specimen from my biopsy did not yield the “Reed Sternburg cells” that a definite for Hodgkin’s, but the surrounding cells, the pattern and extent of the disease and my history all conclude I again have cancer.

I am not shocked, but I can’t tell you whether knowing or suspecting before hand makes the news that I MUST go into treatment again any easier.

Treatment is what I fear most in my disease. I know all to well the adage “if the disease doesn’t kill you, the cure will” is true.

Treatment is scary.

Dana Farber has a plan they would like to execute.

I have options.

I love options.

Dr. Alyea has suggested a combination of chemotherapies which would be started as soon as possible due to the extent of my disease and discomfort I am experiencing.

The preparatory regimen would be Gencitibine, doxil, (form of adriamycin, which I received in May 2006, that is put inside lipids, making the drug last longer.). These medications are less toxic than other options, less toxic meaning: less mucositis and less likely to effect heart function.

Decadron and vinorelbine may also be included. The combination may be tolerated well, but I always hear this.

The good news, the silver lining of this regimen is it could be done in Boston or at DHMC, if they are comfortable.

Dr. Alyea spoke with Dr. Gautier, my former hematologist, at it appears they could be comfortable.

I could receive my treatment while living at home!!!!

I could see Xander every night! I would be able to participate in his life. I could sit at his soccer games. I wouldn’t have to separate from the people I love.

I am, cross-your-fingers & pray-to-God, hoping that this can happen.

I am clearly in need of treatment quickly, and I want/need to be close to the ones I love.

I think this may almost be as important as receiving the very best treatment.

Little is understood about the interaction between emotions and healing.

These medications would be given on days 1 and 8 or 1 and fiften on a 28 day cycle. The variable is based on my reaction to the medications and my blood levels.

After two or three cycles (equaling two or three months), we’ll hope for good response (meaning a remission).

The chemotherapy I will likely take has two regimens. I would receive the lower dose since I am so close post transplant.

Then my donor from my transplant last October will be contacted to donate T-lymphocytes.

The process of donating T-lymphocytes is easier than what she had given previously, and only requires a one time “apherisis” (collection) through a large bore IV.

There is also another combination of chemotherapy that is an option, but I am not to keen on. We could combine gdp, platinum, gymcytobeam, & doxil.

However, Platinum is toxic, not to mention extremely expensive.

I worry about the severity of side effects in receiving this regimen. I don’t think this is the option we will proceed with.

I have emailed Dr. Jacob in Germany.

I am thinking that proceeding with this chemotherapy regimen and then a T-lymphocyte infusion is more of a continuation of therapy that I have all ready received.

I feel with this route, we are trying to use the allogenic transplant and donor’s immune system to it’s greatest advantage.

However, I am concerned that if I proceed in this manner it will close doors that for treatment at the Klinik Im Alpenpark that may be more effective and less toxic.

I have all ready reached out to speak with her. I do not want to run into a life altering decision only to find out later that I have less options because I was rash.

I am also considering meeting with Dr. O’Connor at Columbia.

I have emailed Melissa, my NP at Dana Farber, to possibly coordinate this.

He has come highly recommended by many of my much loved blogger friends.

He interests me as a practitioner. At the very least, I’d like to familiarize myself with him.

I would like to hear how he would proceed with all his knowledge.

I’m running off to NY just to see my good friends from college this weekend.

I could run away to see Dr. O’Connor on a days notice.

I am so lucky I went to school in New York. I’m fortunate to have the great friends and support system I do.

OF course, I am not done with the possible risks for again starting treatment, which range from any little ailment to death.

I will be doing the standard tests in preparation, probably lung function tests and a MUGGA.

A great risk is the return of my graft vs. host disease.

I have been advised to stop my prednisone immediately in prepartion to start chemo.

Luckily, I had begun tapering myself since I was unhappy with the side effects I was feeling.

I felt like a hairy puffer fish.

I was taking 10mg daily.

The Lymphocyte infusion could increase severity of GVHD. This will need to be watched closely as it is severely painful, but on the Brightside, GVHD does posses anticancer qualities.

I left the appointment with the instructions to “start thinking therapy.”

I am thinking, really thinking.

Thursday, July 30, 2009

WHOA, Holy Response

I didn't quite expect the very concrete, black and white, response about my getting robbed right from under my fatigued, cancer riddled nose.      It is a difficiult situation. It is a family situation. .y husband and I are discussing how to proceed. Actions will be taken, but we can't handle inviting more drama into our lives.   Jon and I will discuss this among ourselves with the best interest of our relationship and our family in mind.    I hope everybody understands. We have terrible extenuating circumstances that could prevent us from taking actions we normally would.     We can't fight every battle.     We need to fight my cancer. I need to fight to survive.     Right now I feel like I am treading water, I am exhausted. My legs are heavy. I'm slipping. I need to focuson my survival and devising a way to financially stay afloat.     I did just suffer from having my $566 monthly income removed.       I also recently suffered a severe medical setback. I now know my cancer has spread like wildfire through my abdomen to my neck. My pet scan lights up like a christmas tree.       I am driving to boston as I write to discuss a comprehensive treatment plan that may include, but is not limited to, chemotherapy and radiation, in the united states, in germany or in some form of collaboration.   This is highly specialized care we are discussing. I need to focus to survive. I need to put my energy towards my needs and living my life.      I have my priorities and I have finally come to a place that, though I would like to, I know I can't fight all the battles. I need to save myself first. Then second, I need to protect my family. I am not superwoman. I can't simultaneously save the world, jail bad drug addicts, reform health care while fighting a disease that, due to business strucures and small print, threatens to bankrupt my wonderful family.       If I have to be ill, I want my family intact. I want them strong and happy when we can be, insulated from the bad. We can protect ourselves. That's what we'll do right now.        Right now we are in the midst of a health catastrophe. To put it lightly, we are all devastated. I can barely put on foot in front of the other.    The babysitter decided she wasn't able to help. Everything I have been doing has been with x at my side.  I am lucky he is so mature for a 6 year old. It saddens me I couldn't shelter him from my illness, but at the same time, he is a loving boy who cares and nurtures his friends and I.         My pain is excruciating, sometimes requiring up to 100mg of instant release morphine to gain control.     Even then, with the disease in my abdomen, a deep breath, laugh or cough will send me into agony. If I move wrong I receive a shock wave through my body, reminding me that I have been invaded, and that any move or gesture I make may come with consequences, no matter how hard I try to control it.           Can anyone really blame me for wanting to ignore the bad and spend the good times I have laughing and joking with loved ones? I know what I want to do, and that is really all I plan to do.         I understand the theft is terrible. It's mind boggling. It's a felony. That's why I wrote about it.    I want people to know and understand the trials I go through simultaneously as an indirect result of my care.   I notified my np immediately. Since such a large portion was taken, and since I filled the script so recently, I am at risk to be unable to refill it.    Luckily, melissa is willing to work throigh this so my health will not be compromised by two peoples' selfish short sightedness.      But I am all ready sleeping with ativan b my bedside and sometimes taking it during the day to calm my worries. We have so much to deal with. We can protect ourselves from this in the future and that is what we'll choose to do for now. I have to focus on my health and surviving. Any additional stress could impair my immune system and further complicate the disease. I want my family as strong as we can be, and we are bonded in our decisions. We'll pray for the people, but now, we are headed to boston to work on my plan of treatment. Then, with this information, we'll work on a plan to pay for it. I'll keep you updated. Keep us in your thoughts and prayers.

Wednesday, July 29, 2009

I've Been Robbed

I’ve been robbed.

This isn’t a figurative statement.

I am not talking about how I have been robbed of a healthy life, career, and twenty-something experience.

I am also not talking about the long term disability insurance company or my health insurance company who have had their hands in my wallet for years now.

This statement is very concrete.

I’ve been robbed.

Even as I have said it a few times and now I type it I can’t quite comprehend the ramifications of this person’s actions and my response.

How do you feel when someone does something so despicable and reprehensible to a person they are close with?

How do you feel when your trust has clearly been violated, especially when I had suspicions, but trusted instead?

How could anybody take advantage of someone as sick as me, knowing what my family is suffering from, for their own benefit?

I can’t wrap my head around this.

I would rather trust upfront and deal with the consequences. I think everyone deserves the benefit of the doubt, no matter how many horror stories I have heard of misbehaviors and rumors of drug dealing and drug use about these people.

This all feels surreal.

I wish I was waking up from a bad dream.

I wish I was making this up.

If you have ever read my writing in disbelief, I understand.

Who knew the truth could be so shocking? Who could really make these events up?

After I started to suspect, I went into the bathroom where I keep my medications.

I take Oxycontin daily for pain.

Oxycontin, if you’ve ever read the news, is a drug addict favorite. It is long lasting. It is used to control my pain through out the day so I can function with a baseline comfort.

It’s a Godsend to me. I can play with my son. I can go for walks. I can read and swim. I can call friends and make plans.

I can write.

Without these medications I would certainly be curled in a ball, in severe pain, begging for this fight to be over.

This is why narcotics are prescribed, but for every good there is a bad.

I’ve experienced the dark side of being prescribed pain killers in the past.

Several years ago, a teenager tried to rob my house in the middle of the night only to be scared off by my ferocious german shepard.

I live out in the woods, with no neighbors within eyesight or earshot. I am in a small community.

Drug addicts are smart enough to deduce that a cancer patient is prescribed pain control medication.

I think this man cased my house. He showed up on an evening my husband was away and drove to our door, only to be met by a raging animal.

I LOVE MY DOG.

Yesterday’s problem is different. This was perpetrated by people I know. These people opened the door and walked into my home without knocking, feeling comfortable they would have been invited in.

When I saw them I did invite them in. They had a reason to be at my home. I knew them.

I have also been robbed of my medications in the past. It has also been by people who I welcomed into my house.

When those people were confronted, they shrugged their shoulders and told me, “I could get more.”

There is no reasoning with a drug addict.

It is most often people I know. They are close enough to be welcome, but distanced enough to be suspicious when they just “drop by.”

Yesterday, I was trying to sneak in a nap while Xander watched TV and played webkinz.

I was tired and dazed when they came in. I opened my eyes to talk.

One of the woman said she had to use the bathroom, my public half bathroom.

The other stayed for a second and then said, “I have to go too. I’m just going to use the bathroom in your room.”

She scampered off quickly. I was tired, dazed, and let her, even though we both know I have a full bath in a more public space just as close on the second floor of our home.

She headed quickly to our master bath.

As soon as they were done with their “bathroom breaks” they were out of there, having grabbed what they came for.

I was suspicious.

I was ill at ease.

Something was wrong, but I didn’t feel like dealing with it.

When Jon came home he did.

I went into our master bathroom, where my daily medications are housed, and while sitting on the toilet I saw a white pill with a “10” inscribed on it.

“That’s an oxycontin.” I thought to myself and picked it up, “I would never treat my medications so badly. I wouldn’t throw any on the floor.”

This was big, bad warning sign number one.

I have a six year old.

He is curious.

He likes to do experiments and make “potions.” I’m certainly not going to leave ANY pill lying around for him to use as an ingredient.

I reached for my basket of meds and my oxycontin was lying on the top.

I pulled it out and shook it.

It felt a little light.

I put the fallen pill back in the bottle and took the bottle out to the kitchen where Jon was cooking.

It was time to play pharmacist

I counted what was left: 18 pills.

Then I looked at the date when the prescription had been filled. I filled it nine days ago. I would have taken 18 pills myself as prescribed.

Eighteen + Eighteen= 36 pills that were accounted for.

I was given sixty for the month.

I take the medication twice a day, one in the morning and one in the evening.

I was missing a grand total of twenty-four pills.

DAMMIT.

I tried to think of where they could have gone.

I thought maybe I separated them for protection. I looked around the house.

I really didn’t want to accuse anybody when I wasn’t absolutely sure. I am forgetful, but I am pretty precise when it comes to my medications.

I quickly ran out of possibilities for a reasonable loss of 24 10mg oxycontins.

This is the dark side of being a cancer patient.

I have written about this or alluded to this before.

I am not sure if this is seen among other patients and if it has become more prevalent due to the young age of people suffering from painful, chronic debilitating diseases.

Being the same age as these drug addicts, as well as having a binding relationship, they know I am prescribed and they will find a way to gain access.

I am trying not to lose faith in humanity based on this.

I cried myself to sleep and prayed last night that those I may leave will grow safely despite what happens in the world, especially if I am not there to guide them.

I am hoping to do all I can so if I have to leave this world it is a better place where children receive the love and safety they deserve, where everyone’s basic needs can be met allowing even those with the largest obstacles to overcome to thrive.

Right now, I just cry.

Tuesday, July 28, 2009

I sold my Husband for Health Insurance



IIold my husband for health care coverage. I know what you’re thinking. I’m being extreme. Before you judge, let’s do some math. Let’s look at the real price of health care.
In April 2006, when I was diagnosed, I had short term, long term, and life insurance. My husband held the health care policy. I was making $65,000 yearly as an RN with shift differentials, over time, and bonuses. My base pay, however, was $36,900. This was calculated based on my regular time day shift pay at thirty-six hours per week. When I became sick, short term disability insurance only covered 60% of my base pay. That equals about $22,140 yearly. That’s a pay cut of $42,860. Ouch, that is one tough pay cut to swallow.
Then, to add insult to injury, I had to have a biopsy to confirm my diagnosis. My insurance deductable was $2500 at the time. I reached that number in one swoop. That’s $22,140-2500= $19640. Then I would see my specialist weekly at $30 a visit, and the medications for the nausea caused by my chemotherapy were $10-40 each. These expenses were known costs associated with my illness that my husband and I were able to manage. My co-payments equaled $3600 in the first year of my illness. $19,640-3600= $16,040.
Other unforeseen expenses started to tally up. I had to travel seventy-five miles round trip to the hospital for treatment. Cha-ching. My husband took time off work to care for me. My son had to attend day care full time since I was too sick to care for him. I needed the visiting nurse to come to my home. I needed supplies for my central line, an infusion pump, and long term antibiotics.
After six months, I was no longer considered employed, and my life insurance had to change hands from my previous employer to me. The life insurance company to one look at my diagnosis of lymphoma and dropped me like I was hot.
Finally, my health insurance company started to refuse reimbursement for my PET scans. At $3000 a pop, the gold standard for cancer staging was not within my budget, and I would spend my few precious healthy moments on hold fighting for payment. However, when I was not healthy, my husband would give the hospital our credit card number for fear my illness would ruin our credit for life.
Then, while I was undergoing my bone marrow transplant, the short-term disability company called my husband to inform him that I had not sent in my social security award letter. He sent in the letter, only to be informed I had been over paid $1242 monthly from October 2006- March 2007. The balance had to be paid back. He again reached for the credit card. That equals $7452 or roughly half my income. $16,040-7452= $8588. This number does not include travel 70 miles roundtrip to Dartmouth Hitchcock Medical Center, and now the 400 miles to Dana Farber. The lunches I had to eat. It does not include the $5000 yearly I was paying in daycare. These numbers put me in the red before mortgage, taxes, insurance, car payments, oil, etc.
I am getting a middle class beat down. My American dream is getting a butt kicking. Yes, this is all tax deductable, but my $1500 tax return was a slap in the face against all my expenses.
Then in February 2008, I was again in remission, my husband’s crohn’s disease began to flare up. He was in constant pain and I pushed for him to pursue treatment so our son could have at least one healthy parent.
He was told, at twenty-nine, his Crohn’s had caused scarring in his bowel and surgery was his only option. The surgery would require an eight week period of recovery.
My lymphoma reoccurred in March 2008. I was told I had exhausted traditional treatment and should look into the major cancer centers in New York and Boston for trial drugs and an allogenic stem cell transplant by an anonymous donor.
With the support of our friends and family, we decided to pursue the medical advice given to us by our physicians.
Four months later, on July 7 2008, I started a clinical trial at Dana Farber Cancer Institute in Boston.
On July 9 2008, my husband underwent a bowel resection at Dartmouth Hitchcock Medical Center.
But wait, he was our insurance policy holder! No work, means no insurance. No work means you have to pay the dreaded COBRA at $1600 a month for a family (and that’s a deal. Health care cost go up at 3x the rate of inflation or 40% in 2008) with a $6000 deductable. Failure to comply with these rules and allowing our insurance to lapse would label us as having “pre-existing conditions” and make us uninsurable for life! We had all ready paid up our $4000 deductable for my health (an increase due to the change in his companies insurance) plus countless dollars in traveling and co-pays.
Disability also means you receive 60% of your base pay. Ouch, our wallets are hurting. Let’s do the math.
Let’s say my husband made $50,000 yearly at the time of his illness. He’s now down to 60% of his pay or $30,000. Not too shabby. This would bring in $2500 monthly tax free from disability insurance, but now we had to pay $1600 monthly to keep our insurance or $19,200 yearly ( $30000-19200=10,800). Then we would have a $6000 deductable ($10,800-6000=$4800)
From a solidly middle class family with an enviable combined income of $115,000 we know had Forty-Eight Hundred dollars for a family of three for food, taxes, housing, travel, etc.
Could you afford to get sick?
My husband spoke with his company who agreed to allow him to work from the hospital and from home on a laptop. Our solution to the daunting financial picture we were facing: My husband would have to continue working.
His surgery required twenty inches of his small bowel to be removed along with his ileo-cecal valve, three hundred sutures and staples, and an eight inch abdominal incision. He took less than a week off. He continued to work through a post-operative infection while I was receiving care in Boston.
Now that his eight week period is up, he is married to his company. Any person who is willing to work through bowel surgery for insurance lives in fear of losing his job. His company now knows this. If there is a choice between supporting me in my transplant or working. Working wins. My parents can take care of me.
I hope people are aware that my story is not unique. The health care system is the next big national crisis. Like oil soared and scared us into change, health care is set to implode at any time. Let’s make some changes before it’s too late.

Monday, July 27, 2009

Jon’s Health Update

For all of you who do not know my husband Jon has Crohn’s Disease.

This is an irritable bowel syndrome that causes severe inflammation within the bowel. When the bowel continues to be inflamed it starts to create ulcers. It can spread

throughout the bowel and if left untreated or inadequately treated long enough will cause diffuse scarring.

This is what happened to Jon years ago. He’d been suffering from abdominal pain for a while to the point he was unable to eat.

He dropped to 160lb on his 6’6” frame.

I joked I was going to film him and ask for donations he looked so malnourished.

Eventually he sought help, and in 2004, he was diagnosed with Crohn’s disease.

Last year in July he underwent a bowel resection to remove the portions of his intestine that had been scarred and would absolutely, 100% never heal, causing him pain.

I wrote about this last August or September in “I Sold My Husband for Health Insurance” (Yes, I’ve almost been blogging a year now!).

I think I may repost that testimonial.

It took a foot long incision over his abdomen and three hundred stitches and sutures to put jonny back together again.

During this period, I was undergoing the LDH study in Boston. Heather was taking care of me.

Xander was with my parents.

Jon was at home on his own. His parents had a previously scheduled vacation.

When we got the results later in the year we were shocked to learn that the resection had removed a carcinoid tumor in his bowel!

Jon had cancer at the ripe old age of twenty-nine, and by some miracle, it was contained, as far as we knew, in the portion of bowel that was removed due to his Crohn’s.

At least, that’s what we thought.

Thank God for Small favors.

We all breathed a sequential sigh of relief and moved on, distracted by my medical problems.

If you didn’t think our situation could get any worse, I’m here to tell you maybe it can.

Jon saw his specialist today who informed him that the carcinoid tumor found a year ago does need to be dealt with.

He could order a PET scan (just like the ones I receive); however, a PET would mistake what may be inflammation due to his Crohn’s disease for Cancer.

This mistake would buy him another colonoscopy.

I bet he is loving those.

My first thought when I heard “PET Scan” was “How are we doing to buy one of those?”

I had visions of submissions, rejections, and resubmittals dancing in my head.

Jon’s specialist at Dartmouth Medical, Dr. Seigal, spoke with a specialist from Norris Cotton (Dartmouth’s Cancer Center) who suggested a urine test that would be more definitive.

I didn’t go to Jon’s appointment. He wanted space. I thought they were discussing some simple medication additions.

Now I wish I went.

I haven’t processed that idea that Jon is having a Colon cancer scare, or even that he had colon cancer. The idea was brought up so lightly by a very skilled doctor and a “resected carcinoid tumor” doesn’t sound that scary after facing down a bone marrow transplant and heading to another.

This is scary. It’s too much to process.

All I know if I have a big, raging headache.

I also know that it’s time to cover our ass. . . . . ets.

We need to see an estate lawyer, pronto, to ensure Xander will be taken care of per our wishes should anything happen to us.

My little text from legalzoom.com will just not do.

I feel a big, irritable, cranky mood coming on.

If I get lectured about the short-comings in my personality, such as behaving like a raging bitch or being forgetful, I may just reach my breaking point and show the unlucky person EXACTLY what a raging bitch is.

My shingles has flared up. The child care plan we had hoped for will not be working out and Jon may have cancer.

You’ve all been warned. Tread carefully.

Thankfully, I have a girl’s weekend coming up. I am heading to NYC this weekend with my cousin Steph to visit Colette, Daisy, Laurette, Maggie, and Yanellie.

I need a break from reality. Hill’s going to go hide in Harlem again.

Dear Adam's Mom

I am so sorry for your loss.
Thank you so much for writing during what must be a very difficult time. You are a very brave woman facing one of the most terrible tragedies a person can face.
We all applaud you.
Thank you for writing to clarify the picture.
I certainly know how in situations like these misinformation gets spread.
Not being close to Adam, I was making conjenctures based on the experiences of many patients.
I am sorry if this caused you more pain in anyway.
I do want you to know that many of us are thinking of you and your family at this time. You have a support in us whenever you would like it.

It's Heath Care Time

**I was surprised by the outrage expressed at my recent experience with Reliance Standard Disability “Insurance” Co.

I am also happy to hear I am not alone. I would certainly be willing to share my story anywhere; however, I am unable right now. I will write more about my experience with these companies soon. This is not the first time, but I was too sick, too tired, and too embarrassed to talk and ask for help.**

To Andyson: send me an email about Thursday. I lost yours.

Please Be Aware This was Written several weeks ago.

It’s Health care time.

Health care, everywhere, that’s all I have been seeing, in the news and on tv.

I knew this time would come.

I had been waiting for it.

The country was poised to understand the implications of our archaic failing system even if the governmental hand had been forced by a catastrophic financial depression scraping off the façade of American prosperity to reveal the true picture of how Americans suffer and struggle for basic needs.

We are the land of the free, but how free are we if we can’t meet our needs?

The statue of Liberty says, "Give me your tired, your poor, your huddled masses yearning to breathe free,
 The wretched refuse of your teeming shore.
 Send these, the homeless, tempest-tossed to me.
 I lift my lamp beside the golden door."

We, as a country, have experienced a significant transgression from this mantra in the years since receiving Lady Liberty as a good will gift. Our strongest statement of foreign policy has long been forgotten.

Maybe, somewhere, in small print on Ellis Island, it states, “if you have the financial means.”


I read a title to an article on MSN.com yesterday asking, “Is capitalism making a comeback?”

I didn’t even waste my time clicking the link.

I think capitalism, whether we like it or not, is getting a full-blown cultural overhaul. This is not an overhaul taking place in meetings and being set by agendas with policymakers, this is a social change, decided by the people, who due to personal misfortunes realized capitalism is not working completely.

Just like the world’s tectonic plates shift and readjust to meet our planet’s needs, humanity, as a whole, is doing the same thing. We are readjusting based on needs. We are “yearning to breathe free.”

Now that the scab covering the deep festering wound of health care in America has been picked off and exposed, I can’t pick up a paper without seeing several articles on policy reform.

Horror stories are also popping up.

In Sunday’s edition of the Los Angeles Times, David Lazarus writes about a LA resident who, despite being a pillar of health at 44 years old with no more problems than a low thyroid level, received a letter from Blue Shield California saying her monthly insurance premium was going up by 54% on July 1.

WHOA! Could you imagine getting that letter?

The letter states, “Rates are changing due to rising costs across the health care industry.

Well, costs are also rising to maintain our standard of living.

Thankfully food prices have gone down to alleviate some of the pressure from American’s investments that have tanked in the past year, but what is to come for Americans?

Rapid rates of inflation will come, but they are all ready being seen in the insurance industry and health care sector.

Could you afford a 54% increase in your insurance plan? Could you afford that if you had recently become sick, lost your job, and planned to receive tens of thousands of dollars in healthcare?

Local insurance brokers, according to The LA Times article, say Blue Cross Blue Shields increases this year are from 8-28%.

I can only be left to assume that this is to keep their hefty prophet margin, especially if they are instituting these rate hikes on healthy individuals.

Despite health care reform making news and an aggressive, possibly overly optimistic, timeline to have the health care system overhauled and a historical bill on Obama’s desk in the fall, American’s are feeling the squeeze in a very big way by the industries with their hands in our health.

America has taken a swipe at raising revenue by increasing the cigarette tax; however, in watching local politics, the politics of my native NH there is a significant budget gap.

In yesterday’s Eagle Times Sen. Bob Odell himself reported a budget funding gap in our state of NH.

A bill to ad electronic gambling to an all ready existing horse track in NH to gain revenue for this funding gap has been rejected due to fears the placement of a few machines in a select location where gambling all ready takes place will turn the whole state into Las Vegas.

People must have visions of vagrants and mob wars dancing in their heads in dear old NH.

In reality, if we were to gaze back to the past, this is the same argument that was made twenty years ago when NH began looking into the lottery as a possible means of added revenue.

A fundamental reason for knowing history is to learn from our mistakes, and from our successes, and proceed accordingly.

I feel fairly comfortable stating the lottery has not lowered the quality of life in NH.

The beauty of adding these programs, such as gambling, to create revenue is that they are being made available and convenient for those who all ready qualify to use them in specific locations.

The structure of the bill does not allow for slot machines to pop up on every street corner. It allows gambling at an existing horse track.

I look forward to seeing the bill proposed again next year.

What really disturbs me regarding this existing funding gap exists in NH is the primary area of budget cut funding will take place in reimbursements towards Dartmouth Medical Medical Center and Boston Childrens Hospital.

WHAT?!

You are cutting the sick to the tune of millions?!


When you cut to the bottom line from institutions that provide health care, those getting hurt are not entirely the hospitals and staff, it is the patients.

The quality of our care is being compromised by a budget squeeze that had a possible remedy.

I see debt being shifted from our government onto our hospitals.

I am seeing visions of inability to access care dancing in my head.

There is all ready a huge discrepancy between what medicare/Medicaid reimburses and the actual cost to effectively treat a patient.

I spoke regarding this issue in front of Sen.

Boston Children’s Hospital has all ready enforced tight restrictions on accepting NH Medicaid payments due to lack of reimbursements. Children’s simply can not afford to care for our children if they only receive “Healthy Kids.” The choice needed to be made between bankrupting a fine institution that serves the entire north east region or enforcing strict guidelines to ensure the financial survival and quality of care children’s is known for.

Here is a factoid that makes the proposed cuts to area hospitals all the more frustrating: Dartmouth College, which resides in my lovely state of NH, is currently researching the best ways to provide quality effective care in its nationally renowned Atlas Project (http://www.dartmouthatlas.org/).

This nationwide study is researching health care issues in hopes of finding the best practices to enforce cost-effective quality care.

Though NH has these great minds in our midst, it seems we can not or will not access the data we have at our fingertips to improve the infrastructure we all ready have.

The NorthEast Region, and NH, possess has everything necessary, specifically the health care infrastructure, the ongoing research, and the patients to arise as a leader among the United States in the health care reform.

It’s time to get started in a big way.

http://dms.dartmouth.edu/news/2006_h1/16may2006_overhaul.shtml

Sunday, July 26, 2009

In Memory of Adam Ferland

“Never Trust A Skinny Cook” –Unknown

My family went to a another funeral.

I, again, did not attend.

This funeral was especially hard on my parents.

A relation of mine (second cousin) died unexpectedly at the age of twenty-nine.

Adam Ferland was diagnosed with Leukemia less than a week before his sudden death at Dartmouth Hitchcock Medical Center.

He was young, he was related, and he died suddenly of leukemia.

You can all see why his death is extremely difficult.

I have been avoiding funerals for a while now.

All the recent funerals have been deaths by cancer. I don’t want to see the reality that people actually die of this disease.

I especially don’t want to see that relatively healthy twenty-nine year olds drop dead suddenly.

My parents didn’t attend the reception afterwards. I was impressed they even attempted the funeral.

Adam’s Obituarary is as follows:

Mr. Adam G. Ferland

August 19, 1979 - July 21, 2009

Adam G. Ferland, 29, of South Royalton, VT and formerly of Claremont, NH, died on July 21, 2009 at Dartmouth Hitchcock Medical Center following a brief illness. He was born on August 19, 1979 in Claremont, NH, the son of Louis and Nancy (Marvin) Ferland. Adam attended St. Mary’s Elementary School and was a 1998 graduate of Stevens High School in Claremont. On January 2, 2005, he married Pat Densmore in Sharon, VT. Adam was employed the past few years as an inventory coordinator at King Arthur Flour in Norwich, VT. He enjoyed his family, fishing, his pets, and working on vehicles. Adam also assisted with the Sharon Share Program, which helped to provide low cost meals to people. He was predeceased by his paternal grandparents, George and Gilberta Ferland, and his maternal grandparents, Frank and Theresa Marvin. Members of his surviving family include his wife, Pat Densmore of South Royalton, VT, his parents, Louis and Nancy Ferland of Claremont, a brother, Spencer Ferland and his wife Lindsey of Claremont. He is also survived by his step-sons, Timothy Calabro and his wife Katie of Randolph, VT, and Daniel Calabro of Barnard, VT, his niece, Kayleigh Kendall Ferland, who was born on June 28, 2009, his friends Sara (Bowie) Svendsen, Alissa (St. Pierre) Bascom, Josh Wyman, Josh Stocker, and Darel Limoges, and his aunts, uncles, and cousins. A celebration of Adam’s life will be held on Saturday, July 25, 2009 at 11AM at the Roy Funeral Home, 93 Sullivan Street, Claremont, NH with Rev. Shawn M. Therrien and Rev. Deacon Paul Boucher of Saint Mary’s Church and Pastor Robin Lunn of Sharon Congregational Church, officiating. Friends

may call on Friday, July 24, 2009 from 6PM-8PM at the funeral home. In lieu of flowers, the family suggests memorial contributions be made to the Sharon Church Summer Lunch Program, PO Box 42, Sharon, VT 05065 or to St. Vincent De Paul, 32 Pearl Street, Claremont, NH 03743.

You can send messages at http://www.royfuneralhome.com/serviceinfo.php

I feel guilty talking about Adam’s death in terms of me, and my viewpoint, having the advanced blood disease I do; however, I think the world should have the insight.

I have seen as a common theme among twenty and thirtisomething bloggers with advanced diseases how often we latch onto each other as support, bonded by our disease in a way few people will understand, a manner that disregards all superficial information and surpasses small talk, then we experience the sudden loss of someone like us, who shared our feeling and fears on an intimate level.

The internet has provided the boundary I need to seek support but also maintain a strict boundary so if someone I care about does have a set back or die, I am insulated.

I never actually met the person. We were “only” friends on-line. This helps keep the idea of death from cancer surreal.

I can convince myself maybe that person didn’t really exist, maybe they were only a fragment of cyberspace. They didn’t really have a fiancée, a baby, five kids, a husband, mother, etc.

I can ignore their deaths and continue with the status quo.

I don’t want to process all those deaths. Imagine the stress on my poor psyche.

I haven’t processed his death, but I don’t think I will until I am well.

I hadn’t seen Adam recently. He’s a fixture of my childhood from church. I would see him every Sunday. Our families would talk, but he was just a little older than me so we didn’t have so much in common.

What I have heard about his life was wonderful. He enjoyed cooking and was active at his congregational church in Sharon VT. He helped provide meals to those who needed them.

How can anyone not take pause and feel sadness for a man who died so suddenly at such a young age who participated in caring for others?

Please take a moment of silence to think of him.

Adam did get the chance to marry and had two step-sons.

I’m happy to learn, though his life was too short, it was full.

It’s not the number of years of life but the life lived in those years.

Unfortunately, Adam is a model for the insidiousness of the symptoms that identify blood cancers.

He is evidence that young people suddenly drop dead from a terrible disease I have. I’ve known there is a possibility what happened to Adam could happen to me.

I could be fine one day and suddenly suffer a setback so extreme it takes my life.

This is a reality I try to deny, but I also try to live my life accordingly.

I am happy for the years I have lived with my cancer. I am so sad for Adam and his family that they did not have the time to process his disease, and grieve in anticipation, of his death.

I am also stunned by the fact that he was born and raised in Claremont, in a vicinity that has seen a large number of diagnosis and deaths from blood disorders.

I think he grew up in West Claremont, which would put him within a five mile radius of my home and where I grew up.

In this radius, I live with my Hogkin’s disease as well as another young woman with resistant Hodgkins. A mile down the road lived a woman in her twenties who was diagnosed with leukemia and passed during transplant.

Now, Adam has died.

That’s four in a very small area. It is also 50/50 life or death.

These four people have been diagnosed in the past 3.5 years.

I don’t know how much more evidence is needed to say there is a cluster of blood cancers in this area and have someone research the cause.

I’m too sick to tackle this clear pattern.

Adam was diagnosed with leukemia less than a week before his sudden death.

He is the victim of the vague symptoms of leukemia, and also our medical system that’s dynamic discourages second opinions and limits access to outside care.

Adam was a cook who loved to eat and suffered from diabetes.

Though his diabetes was controlled through the use of an insulin pump and was apparently well controlled, his symptoms were attributed to his appearance of overall lack of health.

Any swelling in his abdomen was probably disregarded as obesity. The fatigue and aches were attributed to his diabetes.

I think there is confusion in what is being discussed as a “single payer system.”

In this system, a new option for healthcare would be available. It would not erase the existing system entirely.

Health care in America functions on the capitalist economics 101 principle of supply in demand.

Demand for health care is high, and will only get higher with the influx of the baby boomers, people living longer, and living with chronic diseases that once led to an early death.

Theoretically, all this demand with a limited supply is causing sky rocketing prices, as well as inability to access care.

It seems, Adam couldn’t access care other than his primary doctor who had difficulty seeing past a twenty-nine year old, overweight, diabetic.

In the single payer system, he would have the option of buying into a different insurance plan giving him the option to say, “Forget you, Doc. I have seen you three times. I know something is wrong, and I am going for a second opinion.”

Our current insurance system doesn’t allow this. It ties the hands of patients with vague symptoms and dangerous diseases.

Now, as Adam as an example, we all see what happens in this system: young, caring individuals die suddenly.

The health care reform idea would simply add more options, more supply, to a system with skyrocketing demand.

I do not think this sounds socialist.

Place yourself in the shoes of Adam or me, even if it was, is it better to be sick than socialist?

Clearly, there was a delay in diagnosis, which is also a huge recurring theme seen among the stories of young men and women being diagnosed with cancers.

Even I had side effects which I sought treatment for in December 2005. I was officially diagnosed in April 2006.

Remember, during this period I was working as a nurse. I was surrounded by diagnosticians, any of which I could stop and clobber with questions. Most of which respected my medical opinion regarding others. They respected what I had to say regarding me.

In Adam’s instance, the cause of the fatigue, aches, and probably extreme pain weren’t pinpointed early enough. His tumors had grown enough to take their toll and overwhelm his vital organs.

He likely was in the position so many of us find ourselves in where we know something is wrong but we hit a healthcare wall.

He kept hitting the wall until it was too late.

Please take today to remember Adam and pray for his loved ones and family.

Saturday, July 25, 2009

Hooray, It's Saturday


Hooray, today is Saturday, and thus, the conclusion to one of the most hectic, hellacious weeks EVER.

Believe me, it was bad, I have had many, many hectic, hellacious weeks before and this one was up there.

Let’s recap: a week ago Weds. My neck starts to swell (lymphedema) much like cancer reoccurrences in years past, and I run to DHMC for a check-up with ANNA.

The fact I get to see Anna makes leaving my vacation last second, ditching the kids, and running around NH because of a nasty reoccurrence okay.

My PET scan is scheduled for Friday. I again have to plan for a day out excursion at the last minute, all with a driver, of course, because I am getting medicated to the max.

Let’s take a second and think, “Thank goodness for Liz,” who is a lifelong family friend and my new nanny.

I really didn’t realize how much help I needed. She has really taken the stress off so people can concentrate their energy where it should be.

Now, Let’s all stop and pray that she doesn’t run screaming in the other direction after having to participate in this week’s events, at a whim, with no preparation, because that is what our life is when a major health catastrophe happens.

This week is such a blur of events I don’t want to think about it: Lexi had basketball camp and Xander still had soccer, which we’re coaching but won’t be in the fall. I had my first major political meeting about Patients as Partners at the Department of Health, my house hadn’t been cleaned and grocery shopping hadn’t been done for 3 weeks, since I was on vacation, and all the clothes and packing for that vacation had to somehow be put away so my life at home could have some semblance of organization amidst the chaos.

Xander, also, had his two front teeth pulled at the beginning of the week.

How do you like them apples to kick off your Monday?

He amused all of us by asking, before Dr. Bob put the pliers in his mouth, if he “could do it himself?”

I thought the dentist was going to fall out of his chair on that one. I had to explain quickly that Dr. Maxfield had gone to extra, special school to get to use the pliers.

Really, though, how cool is my kid?

Then, because I am crazy, out of my mind and obsessive, each time I prepare for a biopsy I get this strong urge to paint, and not just on canvas, it needs to be a room.

In April 2006 I painted out half bathroom yellow.

In March 2008, I painted our master bath a refreshing green.

This week, X and I took the rollers to our mudroom, which still only had primer on it since our house’s construction five years ago.

Our life had a plan, and that plan was to build our house in segments as we could afford.

Luckily, the interior we were able to finish prior to my illness 18 months after settling in. The mudroom, which is probably 4”x6”, was supposed to be temporary. Try fitting four people with New England winter wear in there.

We were going to build a garage mudroom next.

I’ve heard the fastest way to get derailed is to make plans. I finally came to terms with the fact that mudroom is a fixture for now, and we have to work with it.

That room had to be painted. It also had to be fixed, since we had a dog previously who had doggie PICA and liked to eat drywall.

Kaiser passed away of an unrelated congenital liver defect over 4 years ago, but the holes in the mudroom still remained.

I painted it taupe, a color I never really appreciated before (it’s a mix of gray and brown, who would’ve thought to combine those?).

It’s a good color for a room I know will be beaten and kicked with shoes, mud, and whatever else.

Despite the stress doing this was supposed to relieve, it did add a little, but Jon picked up where I left off, and now we have a beautifully colored mudroom.

After I had finally gotten in the groove of painting though, I had to jet set off to Natick with Mom, because the weather called for torrential downpours and we weren’t waking up at 4am to get to the hospital driving I that.

At 8pm we made it to Heather and Allen’s house, where I did get to relax.

I did get to see Heather, who I haven't had a chance to see often, and who I miss alot.

Heather had some decadent chocolate pastries awaiting us (mostly me, the steroid queen) and our bed all laid out.

Everybody who needs a place to lay their head at a second home for a reasonable price should head straight to IKEA. I bought a loveseat that pulls out to a double bed for Heather and Allen’s townhouse last year as my sleep spot.


It is the most comfortable pull-out ever and it’s stylish.

A storage box that hides away conveniently underneath it for linens (our Pierce’s toys) can also be purchased.

I love it. I also love we have a home away from home.

On leaving early yesterday, I gave Pierce a little kiss on the cheek and headed out the door, but his almost two year old self wanted more.

He looked at Heather and Allen, confused, and said “Aunt Hillary? Big Hug?”

Yes, I did need a big hug from my nephew Pierce to start the day right. How lucky am I.

Then, finally, it was off to the hospital where I was in for some poking.

This is not the way I usually like to be “poked.”

I know some of you may have questioned whether I was a masochist or not because I keep running back for more painful procedures and I did convert to being a Red Sox fan, but S&M is not my thing.

I like to keep the “poking” at home, thank you.

I will say though, if this HAS to be taken to the hospital, I was lucky to be the patient of two very FINE doctors, both the fellow and the attending.

If I have to be sick and suffer, I should really receive some eye candy for the pain and suffering.

Luckily, having hot radiologists appears to be a trend in my care.

I remember the two from my very first procedure in May 2006 when I was getting my medi-port placed.

Awww, those were the days.

Unfortunately (or fortunately), I am given “conscious sedation” (a combination of Versed and Fentanyl) when undergoing these procedures, which makes me very comfortable.

If you think I am a little too at ease with what I say now, WATCH OUT when I am combined with these medications. They are designed to make you feel wonderfully comfortable but still be able to talk.

Imagine what comes out of my mouth?

Dr. Hottie #1 and Dr. Hottie #2 received a little harassment back in 2006, because apparently, when a mediport is placed, an incision needs to be made over the breast and then the port needs to be eased into the incision to sit underneath the skin.

To accomplish this, the breast needs to be handled in ways that I don’t allow random men to do.

From behind the surgical curtain, from what they thought was a sleeping patient, the whole OR room hears, “WHOA, Somebody over there owes me dinner!”

Oopsie.

I have been known to send what I call “eprazolam emails” after getting my versed.

These are naughty. I equate them to “drunken dialing.”

Other than this, at the hospital, at first, everything actually went really smoothly.

I was an emergent “fit in” for the early morning, aka “the first patient.”

I got into the prep/recovery room and everybody was ready to go.

I headed for the CT/Biopsy room at Brigham and Womens quickly, but once in there, the chaos continued.

The professionals in Boston had opted for a CT Guided needle biopsy of “retroperitoneal” nodes, which are accessed through my lower/middle back.

I also had the option of an “excisional biopsy,” which is what I have had twice before.

I think the needle was chosen for a couple reason: one, I have massive amounts of scar tissue in my neck from all the surgeries, lines, etc., that have been thrown in there which would make another surgery in the area difficult and two, I am now a post-transplant, prednisone popping cancer patient. As far as being immune compromised goes, I am a big mess. There is a huge risk that an incision may not heal, may become infected, and may lead to bigger problems down the road.

The needle used was only a 17 gauge anyway, unfortunately, the nodes being biopsied were not dense with cells.

They were “hypo-cellular” as the radiologist explained. Generally, pathologists like to see “hyper-cellular” specimens. These are the easiest to make a diagnosis.

He is confident, however, that they did receive enough cells in the specimens to make a definitive diagnosis.

To accomplish this it took eight different attempts and hours of “poking” (What can I say, I’m a marathon girl).

Due to the many attempts to get a good sample, I was out at 10 am, and I was in recovery until 2pm.

There is still a possibility that the biopsy did not yield cells that are definite for Hodgkins but are suspicious. I could have to do a repeat.

I made it home just in time to galavant off to Xander's soccer game, which I did not coach, but try explaining to a group of 5 and 6 year olds that Coach Hillary had surgery and just wants to relax.

At least the day ended with a brownie Sundae.

I AM GETTING THE RESULTS AT MY APPOINTMENT NEXT THURSDAY.

I’m saying this loud and clear, because I know it is the big question on everybody’s mind.

I will tell you the diagnosis, and hopefully a plan, when I know.

I am finally at a point where I don’t see the plan for treatment clearly.

With my biopsies, I have always known exactly what the next steps are and how I would progress.

This is extremely lucky for a patient, and now I am in the position so many others are when first diagnosed: I really have no idea what’s going on.

I keep getting asked what is next in treatment and what is the timeline and I snap, because I don’t know.

I need more information.

Suddenly, I have become EXTREMELY COMPLICATED.

I was difficult enough before, and people are looking to me for answers I don’t have.

I have always had a plan for everything, but I am finally running out.

Remember, the alternatives I was practicing on myself I had entitled “PLAN Y.”

For informational sake, what had been lost in the last weeks prior to my flare-up, was my anti-inflammatory measures. I had run-out of my berberis hommaccord (which is like Motrin or Celebrax without the side effects), I was on vacation and not eating the parsley and tumeric (which are known potent anti-inflammatories) I generally do, and I was also not undergoing any type of acupressure to keep myself in balance.

A preliminary blood test for cancer is a “Sedimentary rate” which measures the amount of inflammation in a person’s system and indicates the amount of cancer.

I was working to control inflammation, but I had stopped.

I am not even going to talk about how I plan to stay afloat financially.

UGH.

I will say I have vague plans for both, but I am so happy this week is over.

I’m going to relax.