Baldies' Blog began originally in the UK by a 26 year old journalist with a blood cancer on a mission to inform the world about bone marrow donation.

He has since died, and I took on the cause of making cancer care more transparent for everybody.

Cancer is a disease that will touch everybody through diagnosis or affiliation: 1 in 2 men will be diagnosed and 1 in 3 woman will hear those words, "You Have Cancer."

I invite you to read how I feel along my journey and
how I am continuing to live a full life alongside my Hodgkin's lymphoma, with me controlling my cancer, not my cancer controlling me.

I hope that "Baldies' Blog" will prepare you to handle whatever life sends you, but especially if it's the message, "You Have Cancer."

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Thursday, June 30, 2011

NH Medicaid is Set to Bankrupt Hospitals

From NH's East to West borders, northern and southern-most boundaries the recently passed state budget  has sent waves of terror throughout our healthcare system as huge cuts to social welfare programs, especially Medicaid Reimbursement, threaten to bankrupt even the most prominent of our hospitals.
Reimbursement rates and uncompensated care as been a huge issue for NH's medicaid program since as long ago as 2008 when Boston Children's Hospital started refusing to accept NH Medicaid due to its low reimbursement rates, which had the hospital paying half of each patients care.

If a child was sick enough to require care at Boston Children's, if they needed a bone marrow transplant or emergency trauma care, they are still welcome to receive treatment, as a self-pay.

I wrote about the possibility of devastating budget cuts earlier in "How America's Financial Crisis can Kill You.", which included a letter from The Presidents of Dartmouth Hitchcock Medical Center to their employees and a letter to our representatives  their Board of Director's. 
Well, those desperate attempts came a little too late. If hospital's throughout NH predicted this was going to be a problem they could have acted sooner, joining ranks, organizing bus trips to protest, showing the power in numbers they have that oppose the cuts. 

But none of that was done, just some quiet, polite letter writing. Even after the budget has passed, there has hardly been the severe anger and backlash I expected. I guess the movement to protect hospitals, including all providers and patients, needs a leader.
Now NH medicaid is officially charity due to the States' new budget that passed last week without Gov. Lynch's signature.

We'll call it scary charity. 

Our republican run senates' budget promised not to increase taxes and instead cut hospital funding, mostly by lowering medicaid reimbursements rates to the point hospitals are now paying for the luxury of treating medicaid patients. 

No, they didn't raise taxes on regularly folks, they created a hidden tax on hospitals. A form of cost shifting and  underhanded taxation that preys on the weakest: the sick, the disabled, the elderly and needy, those who can't advocate for themselves due to physical inability or inadequate knowledge. 

Here is the latest letter to Dartmouth employees from the VP of government relations:
D-H leadership pledged to keep you informed about New Hampshire's budget negotiations and the potential impact to our patients and to Dartmouth-Hitchcock. For that purpose, we have created a special tab in Center View Online, called "Budget." <>

I am writing to you now to provide an update and to ask for your help in urging NH Governor Lynch to veto the NH State budget.

On June 16, the legislative conference committee on state budget legislation agreed on a New Hampshire budget that would harm our patients and jeopardize our ability to fulfill our mission. We expect this budget will be passed by both the House and Senate tomorrow, June 22. At that point, the budget will be sent to Governor Lynch, where he can either sign the bill, allow it to pass into law without his signature, or veto it.  Should the Governor veto the budget, it will then go back to the House and Senate for a vote to either override or sustain the veto. If that happens we will reach out to you again to help us secure enough votes to sustain the veto which would cause the budget to go back to the legislature to be restructured.

We need to be very clear: this budget is extreme. It makes the numbers work at the expense of New Hampshire residents. It does not avoid new taxes. It does precisely the opposite; it places the burden for additional revenues on those who can least afford it by cutting needed programs and imposing payment requirements (essentially a tax) on hospitals.

Dartmouth-Hitchcock, as the state's largest provider and New Hampshire's de-facto safety-net hospital, has taken increasing financial hits from the state over the past decade. New Hampshire's Medicaid reimbursement rate is the second-lowest in the country, behind only Mississippi. We had already estimated an unprecedented loss of $60 million this year due to uncompensated or inadequately compensated care; these cuts will increase that to $100 million.

Dartmouth-Hitchcock cannot sustain a $100 million loss without an impact on our patients and our employees. We would be faced with cutting services to our patients and negatively impacting our employees, perhaps through layoffs.

Securing the Governor's veto is the key first step in improving the budget for our patients.

We're already making tough decisions to reduce costs and make care more affordable, while maintaining the high-quality, patient-centered services and care that people expect of us. This budget proposal goes too far. It fundamentally threatens our ability to meet the needs of patients throughout the region who need our care.  We are determined to oppose anything that undermines our ability to care for patients. We are determined to stand up for the services we provide and for the people who deliver them.

Here's what you can do: Contact Governor Lynch and urge him to veto the budget. Tell him that this budget will be harmful to our patients and to Dartmouth-Hitchcock's mission.

Here's the scenario:
Dartmouth-Hitchcock served over 43,000 NH Medicaid patients in FY 2010. It cost Dartmouth-Hitchcock $88 million to care for those patients. NH Medicaid's regular payments to DH totaled $28million, which means that D-H lost $60 million treating NH Medicaid patients. The proposed state budget eliminates an Uncompensated Care Payment to D-H and imposes a 5.5% tax on our net patient service revenue. That means that D-H will have to pay the State of NH approximately $40 million a year. Dartmouth-Hitchcock's total loss on NH Medicaid will then be $100 million a year! No organization, no matter how big, can sustain a loss of that magnitude without making significant changes in how they operate.

Please express your concern about this.  You can call or email Governor John Lynch at:
State House phone: 603-271-2121
Email:  <>

This budget is bad for patients. Critical services will be cut; patients will have to wait longer for necessary care or seek care out of state.

This budget is bad for Dartmouth-Hitchcock. Staggering Medicaid losses will jeopardize our ability to fulfill our mission and continue our role as New Hampshire's safety net health care provider.

This budget is bad for our people. New jobs won't be added and existing jobs could be lost.

This budget is bad for New Hampshire consumers. These disproportionate cuts create a "hidden tax" to consumers who will see health insurance premiums rise.

Emails and phone calls to Governor Lynch's office can begin as early as today and continue until he makes a decision.  (The budget is scheduled to take effect on July 1.)  We are hoping to generate thousands of phone calls or emails to the Governor's Office. We encourage all employees -- including those who live in Vermont -- to contact Governor Lynch. Keep your message brief and polite.  Include your name, your position and where you work.

Thank you for your continued commitment to the patients and families we serve.

This is a coward's move to attack the states' weakest residents through cuts to hospitals, mental health services, NH's catastrophic health program, etc., and at the same time, suggest cutting the cigarette tax.


It's like the big bully stealing the smaller kid's lunch government style, but now the bully is our representatives and the smaller children are NH's neediest citizens and middle class, including my family me and so many others who struggle financially to receive what will now be substandard, bare basic care.
There is something we may be able to prevent though.
The new health law now requires health insurers to spend at least 80% of premiums on health care.  This provision, called the Medical Loss Ratio (MLR) protects consumers and limits adminstrative costs. 
The National Association of Insurance Commissioners (NAIC) has proposed legislation that would dismantle this important protection. If passed, health insurance companies could move large administrative expenses such as brokers fees off-the-books making administrative expenses look deceptively low while protecting profits and large executive salaries.
Tomorrow, NH Insurance Commissioner Roger Sevigny will meet with other state commissioners to decide if they will recommend weakening consumer protections for consumers to the NAIC.
Please email or call NH Insurance Commissioner Roger Sevigny and urge him to vote “no” on dismantling the MLR. Insurance companies shouldn’t be able to pad their profits at the expense of our care.

Tuesday, June 28, 2011

Second Victims: Caregiver Consequences

Cardiac Intensive Care Nurse Kimberly Hiatt, after a flawless, error-free 24 year career, accidentally overdosed an 8 month old child in her care last Sept. 14th leading to her firing, a state nursing investigation, and finally, her suicide.

As a former ICU nurse, I sympathize with her feelings and understand the horror and guilt one single mistake can cause. I also understand how devastating hurting another when you're doing your very best to help can lead to suicide.

The Critical Care culture where a single mistake is cause for firing, result in the death of a patient, cause many sleepless nights of guilt and anxiety, or at the very least, is cause for verbal lashings from superiors and snotty comments from co-workers, is partly to blame. It is the specialty most likely to "eat their young," new nurses looking to start a critical care career.

One reader summarized the tragedy so well, "As a nurse who has made a medication error (I allowed a patient to be prescribed a medication that she had a documented allergy to because I did not check her list of allergies against the drug order I received from the nurse practitioner), I can tell you that it will never leave your mind, that terror and guilt. I am now acutely aware of allergies and find myself checking the allergy lists of patients who are not even under my care for the day just to make sure that nothing has been missed through incomplete charting.
I was devastated when it came out that the patient had an adverse reaction. There was a lot of sobbing; I thought I was going to lose my job. In the end, my mistake led to better documentation within our practice -- we have allergies listed on the front of all charts, allergy buttons on our electronic charting and cross-checking between patient enrollment forms and allergy lists. My clinic managers were very kind to me. I had to fill out incident forms and received a reprimand, but they know that mistakes happen. I've become a better nurse due to my mistake, and my manager has made my work day easier by allowing me to have my own desk where it is quieter and I'm able to concentrate better on my work.
My heart hurts for this nurse and the family of the baby. I think the family of the patient affected handled this with a lot more grace than the hospital and they should be commended for their kindness in this matter. The nurses and corporate heads at this Seattle hospital need to stop eating their young and realize how much it hurts when you make the mistake. I hope that the nurse's family finds peace."

I am so sad this had to happen to both the family and the nurse, but I'm happy her story has brought to the forefront a long held secret among critical care's finest, who are primarily type A perfectionists, that even one mistake in 24 years is one too much. It's likely few of her long term co-workers comforted her in public. She was left ostracized, fired, feeling the guilt and severe depression of causing a death despite the state's finding that she was not negligent without the hospital's empathy to help her "debrief," a common therapy giving after the loss of any patient.
 I'll pray for the family. I'll pray the nurse and all the nurses who give care knowing how harsh the consequences for a single error can be. I hope you will as well.

I hope this will help you understand how serious and dedicated many great nurses are, learn to appreciate them, and even give them a break sometime. Providers are people too. They just try to hide it during work hours.

For the full article go to:

Juicy Gossip Special for my readers

-A crazy person has the capability to drive a sane person crazy

It's been a while since I disclosed some juicy drama, cheesy gossip, or downight smut here. Political opinion posts don't count. I've been busy applying for a SAMfund Grant, which will hopefully cover some of my medical costs, finishing my first book, organizing and understanding my finances to purchase our home and take out some equity (it doesn't look like I can afford Cordycep at this time), playing with X, coaching soccer, and sleeping A LOT to recover from my last chemo. I was also busy being a physical train wreck, but now that I'm hopefully on break from emergency hospitalizations, I've had a run-in with woman drama all ready. 

In general, I try to avoid conflict. I'm the middle child, known to be the peace maker. That doesn't mean I haven't been dragged into some fights in the past or even started them on my own. I'm certainly not one to back down when challenged. 

But facing a near fatal disease does change your perspective. First, I want my soul to be in good standing with my maker. That's what inspired the biggest effort to change any gossipy and judgemental ways. It hasn't been easy. 

Second, my priorities have changed. I see what's important and what's not. I'm not interested in saying hurtful things to anybody. I don't have space in my life for problem makers. It's not about being right for me. I just want to be happy. To be happy I don't dwell on negatives or bad things from the past that someone may or may not have done. I don't even think about bad people. Why clutter my mind with that? A crazy person has the capability to drive a sane person crazy. I don't need anymore help going crazy. 

Then third, very simply, it doesn't make anybody feel good. Why do it?

But, Yes, I still fail. I push buttons knowing it will irritate someone, most specifically my husband.
 But on this particular day, this particular fight, I can honestly say I didn't do anything to instigate anything. I didn't push buttons to start or continue a fight. It really came out of no where. 

I can say this with absolute conviction because the back drop for this incident was The Relay For Life!

 I'm just not the type to get in screaming matches ever, but definately not at charity events in front of hundreds of people, especially the relay which is a celebration representing the strength of those who have survived. 

My team and I had a great time. We bonded. 

Everything was good until we were leaving and I asked a soccer question to another attendee. When the answer didn't fit what I heard, I was confused and tried to clarify.

I immediately saw her tense up. I tried to tell her I was just trying to clarify something, but that just made her jaw tense and tears well up in her eyes.

At this point, I did think about pushing her buttons and making her look like an ass (old habits die hard) but instead started back pedaling hard knowing lots of kids were around (it's not acceptable to fight or have adult conversations in fron of children, they don't need the stress) saying I could figure it out with someone else or she could work it out with them.

I didn't want to ruin a good time during a good cause. The air was filled with laughter. The kids were playing in a place where no one complained about their yelling or running.

But it was too late, the domino effect had been started and couldn't be stopped. "ARE YOU CALLING ME A LIAR?" She hissed at me so loud the hundred people remaining could hear.

I wanted to laugh because no, in no way, did I call or insinuate she was a liar. I asked a question and when her answer wasn't exactly what I heard, I tried to clarify to understand, and then when I saw the face change, I tried to step back and offer the chick a way out that was not a temper tantrum. 

But a temper tantrum is what ensued in front of my family including the in-laws and a hundred+ relay goers. It was something straight out of The Real Housewives. She didn't flip any tables. She didn't drop F bombs and threaten to kill me like in the past. Maybe it's because she was in public. Maybe it's because she knows I've had it with her shenanigans and wouldn't pause to press charges. 

One of my team mates quickly disappeared, clearly embarassed. Another ran up to get a front row seat. X stood, mouth open, shocked, at a distance because he doesn't see adult screaming matches. We try to shelter him, but there was no hiding this one. 

"Get in the car kids" she screamed, gesturing widely.

 "I don't care what you think about me!!!!" She screamed again as she was rushing out. 

"Ok, good to know." I thought to myself, since I really don't take much time out of my life to determine judgements about her unless someone else brings her up who she is also hurting. 
Other than that, Why would I? It would be depressing.

 What she was saying sounded like something straight out of a junior high fight, or even something a six year old may yell at their mother.

X started to cry hysterically that his friend was being taken away. "Well," she hissed again, "the kids can still play together because that's what's best for them" she snarled, storming away. 

I'd say not starting screaming and acting hysterical in front of them was what would be best, but hey, what do I know?

"I'd start looking for a new babysitter!" I hollered at her back, not interested in getting bullied, taking screaming abuse from nowhere, then doing her a favor the next day. 

I hate that this happened. It was a misunderstanding that would have been easily worked out with anybody else. But she's not anybody else. Honestly, I can't talk to this woman because I have no idea what will set off this abuse.

I'm not looking for sympathy or pretending to be innocent, because I have in the past passed judgement. She is not my favorite person, but really, it's because she needs to get her act together.

 Now, mostly, I'm just sad for her that she can't maintain a long term loving relationship without ruining it. Must be a lonely life.

To leave on a good note, I took my first jewelry making
class ever Sunday! Look what I learned to make! So exciting.
Charm, bead color, wording can all be customized!
I've always wanted to know how to do this. Now I do!
What is the worst about this is the effect on the kids. Xander, seeing her behavior and hearing what she said, decided to antagonize his friend immediately afterwards, calling him a liar and saying "I can't believe anything that comes out of your mouth." completely out of no where, psychologically bullying this other kid.

I told him I did not teach him to behave like this and he would be losing his friend privileges if he kept it up, but his smart-ass said I did teach him, by fighting in front of him. 

Grrrr, do not mess with my baby, especially the good behavior I want him to have. It took me an hour to get the two to get along, and only then because I took their side, saying their lives must be so hard and thank goodness they had each other.

I sent a text to the chick saying I would babysit granted she apologized and promised to never fight or behave like that in front of the kids. She replied again with an, "I don't care what you think!"

Ok, point made, but I'm guessing she does care or else she wouldn't feel the need to scream it all over. 

Hope you enjoyed the juicy gossip that is my life. Thought you might like a little insight. 

Monday, June 27, 2011

Inexpensive Travel Options

Who is not looking for a deal these days? I know I am from groceries to travel I want the best for less. Luckily, with this market, companies are giving deals, especially special summer savings.

What goes best with summer? Vacations or staycations, either way you'll need to get there in a reliable vehicle. Whether it be a new car or a new-to-you used car, if you're in the market Hertz is more than a rental service. They have cars for sale that are meticulously clean (some even still have that "new car" smell) and all previous service records.

A friend and I looked into this purchasing option in college (I don't want to talk about how long ago it was, okay), and their maintenance records, cleanliness and attention to detail lead her to buy her first car on her own there, a Saturn SUV (I don't even know if they make those anymore, but she loved it). The experience was actually enjoyable, and the experience of two young woman purchasing a car can be worse than the dentist. You couldn't ask for a better first owner.

So get out there and live it up. The nice weather is finally here. 

Sunday, June 26, 2011

Success at The Relay for Life

Michelle, my right hand woman, and me

Whoa, Claremont's found a cause to support and it's cancer. Last night's Relay for Life was a success, and thanks in large part, not only to the fabulous Board of directors and all 31 teams, but to my-inlaws, especially mom and dad Ford, who organized lighting for the event after the last minute realization that the lighting situation had changed and dragged their camper to the event instead of to the campground to start their vacation so I could comfortably spend the night.

It ended up I couldn't even spend the night. The weather, as it is every year, was cold and damp and the air quality is awful from the allergens and incoming smoke from the west's wildfires. Even now, I don't know how often I want to brave the outside world. My lungs are my best frienemy. The hold out and keep me breathing well enough I am not on oxygen, thankfully, but only well enough to walk half the track, or 1/8 mile, before I need to sit to catch my breath.

But I have more good news, Claremont Relay overshot their goal to raise over $45,000 by $12,500 and counting. The running tally was $57,400 something as of the final ceremony and donations were still incoming. They can continue to come in for this year until July 5th.

This isn't the only smashed goal, and please, if I'm incorrect anyone reading should correct me. The Board wanted to recruit 24 teams, up from 19 last year. They had 31! Their goal was to donate 400 perishable goods to the community through the luminaria program, and they sent over 800 packing!

Trust me, they had a mass of people. I ran into another family with whom we've been lifelong friends and started chatting, completely absorbed in our own world, only to look up and realize we were about to be clothes-lined by the mass of marchers for the survivor and caregiver lap at the beginning of the ceremony. I had to scurry to safety so maybe that's why I got short of breath so quickly. I was also trying to talk and walk, which I haven't been very successful at in a long time, but at least Claremont was successful. We'll see about next year.

Friday, June 24, 2011


"Don't give up! I believe in you all.
A person's a person, no matter how small!
And you very small persons will not have to die
If you make yourselves heard! 
So come on, now, and TRY!"
-Horton Hears a Who
Relay is still on tonight, all night, rain or shine at The River Valley Tech College on Rte 120 in Claremont NH!

5-6pm is registration and 6pm begins the kick-off hour with the survivors walk! 

Team White Tigers still plans on staying up all night beating down that track, especially team co-captains, x and lex. 

Our booth, has Horton Hears a Who as our theme, because a person is a person, or a cell is a cell, no matter how small. We have a cushy Horton and one gigantic Horton head, you can't miss us, along with little flowers to hand out.

We'll be selling cancervivor artists' work (my jewelry, quilts, runners, etc.), handing out information on lymphoma, bone marrow transplants, and educating children about cancer, as well as a sign up sheet for anybody interested in joining a committee of people concerned about our areas possible cancer cluster.

I'll either be there celebrating until 8pm at least, I can't miss the 7:30 team picture, or I'll be holed up comfortably in the camper with a queen size bed and heat.

However, with the weather, if I think I'm risking illness I'm high tailing it home for the night. We also have soccer pictures at 8:30am on Saturday, and guess who gets to represent the coaches? Guess who didn't get a coaches shirt this year?

I'll be representing in J's 3x t-shirt. Hope to see you tonight. 

Grrrrr, go tigers!

What missing 1/2 a dose of one med can do

I decided yesterday to try to separate my prednisone into two doses again to get some stamina.
I've tapered myself to 5mg, the lowest dose I've seen in years, and probably, I will ever see. I only tapered to this dose from 7.5 because I kept forgetting my noon dose of 2.5 mg.

I've been napping a lot. Bendamustine really kicks in a couple weeks after taking it, and I've been playing full throttle with X since he's been on vacation. I've worked out a solid half day of good times together, but the other half, I'm exhausted.

Exhausted to the point of non-functioning. If you call, I'll talk, but maybe not make sense. I certainly won't be chipper or even friendly, and that's if I remember talking to you at all. I may not even be awake.

So yesterday I actually wanted to accomplish something, anything, in my half day. I planned out a couple hour nap. At 1:30pm I hopped into bed. I thought about taking my afternoon dose of steroids, but then thought that it would only keep me up, my mind revving with thoughts, and make me cranky later when I wanted to hang out.

Here you go again, Doc, another patient that didn't take their
 medications like they were supposed to.
I didn't think of the opposite possibility, the side effects of adrenal insufficiency or Addison's disease that comes after taking long term steroids if I miss a dose, any dose. These include nausea, vomiting, extreme lethargy, coldness, chills, extreme fatigue to the point you are doing nothing, do not pass go, you're not getting off the couch, out of bed for anything, and that's if you're not sent into a long sleep.

I bet you all can guess what happened to me.

I went to sleep at 1:30pm and didn't fully wake up again at 5:30. . . am.
And waking up only happened because I forced myself out of bed and headed straight for my prednisone bottle, all 5 mg, and caffeine.

I woke up periodically during my slumber, at 6pm when x and J got home and again at 10pm. I took my evening meds except my herbal tea concoction J made for me. I couldn't stomach it and can't still.

 I always need to take my PM meds. If I'm asleep I need waking because you see what happens if I miss one half dose of something.

Waking up was not easy.

My eyes burned, my lungs were stiff and every part of me hurt, but of course, I did it. I'm doing it. Now I'm even dressed and ready to go check out where X will have his morning summer school for reading. I'm even going to pick up some beef bones for the bone marrow soup I plan to cook Sat before I drop X off for an afternoon at meme's while I nap in prep for The Relay for life!

Wednesday, June 22, 2011

My New Health Gauge

I'm writing this morning, because I need to stay awake. I have plans this am, a coffee date. X dragged me out of bed at 7, like he has for almost every other summer morning of his entire life, and I'm going with it.

X got his very first summer mohawk yesterday.

I know. I know, but it's not your typical high flying, pointy, all the way down the back hairstyle. 

He said he wanted it. We went online to look at pictures to see if it was even a possibility and the first decent picture we stumbled on was David Beckham. Damn, did he look fine. So I decided could have that one. I called it his soccer style, but X wouldn't give up a pic to show you. Not yet, anyway.

I'm working on a schedule that allows me to rest while still enjoying just X during the summer and family time. So far, I've been able to have x half days with mom-in-law taking the other half. The hope is that after her time, J and I can pick him up and we can all play together, but sometimes I still need rest. It will take time to get my stamina back. Next week summer school starts, so he'll be gone in the mornings. I'll have to adjust to resting then.

I did manage to coach last night. Yes, we're at it again, coaching summer soccer. I actually got off the chair onto the field, and told 16 2nd and 3rd graders what to do and where to go, for almost 30 minutes. That's half the practice!

This could be my new health gauge, the coaching ability health monitoring system. If I can't get out of my seat, if I can't even go, uh-oh, but if I continue to get up and do my thing, lasting more than a half an hour, I'm improving. I'll keep you updated.

I saw Dr. G yesterday, and we agreed to a "treatment holiday." I'll have a PET scan in late July or early August to check my status, hopefully just to reassure that I made it to significant remission, other refractory Hodger's have with Bendamusteine. Cross our fingers and pray, maybe it could last until August, or 6 months, 9 months, a year! 

This appointment came just in time, because I got an email from The SAMfund! It's grant time. For any of you survivors out there, or cancer patients who are not currently in active treatment, between the ages of 17-35,  The SAMFund gives out grants for a range of things from medical expenses to graduate tuition to rent. Previously they've given out over $100,000.

The hitch, you can't be in active treatment, and luckily, I haven't been since my last chemo. I just confirmed it yesterday.

If you meet the criteria, google The SAM Fund for more information. The deadline for submitting Part I is Wednesday, July 6th at 5pm EST.  

I'm hoping this avenue of funding my medication works. I hate asking, and the asking factor hasn't gone so well since everyone seems to be in need. I need to find something, that's for sure. Refinance the house is top on the list. 

Tuesday, June 21, 2011

The Line Between Hurting and Helping

I've been running around like a chicken with its head cut off, in circles, not knowing which way is up. 

Disorganization, inability to plan or concentrate, attention deficit, these are very common problems in cancer patients. It's called chemo brain. 

Yes, chemo brain, because the problem of becoming a little flacky during and after treatment, forgetfullness and problems getting from point a to point b are caused entirely from treatment or the stress of diagnosis. 

I started writing partially due to the need to preserve my brain cells by exercising them. 

I knew I had treatment. I knew I was getting more forgetful and  dumber because of it. I wanted to protect myself intellectually as much as possible.

But this isn't the only side effect I've been holding back because of my embarrassment over its severity. And this isn't the only side effect caused entirely by treatment. 

Actually, I'm probably in remission now, so all my issues are therapy induced. 

I haven't been fully honest about the extent of the side effects of my cancer treatment with anyone. I don't want to deter anyone from what is generally a very successful treatment regimen.

 I've recently started to tell a select group, mostly out of necessity, because if they know I'm having these problems they won't ask me to do so much helping.

 I'm all helped out. I'm exhausted. Really, I'd love just to be taken care of the way X gets taken care of or most other children.

And I recognize this point. I've been here many times before. My body is telling me it has had enough, and all I want to do is enjoy my time as much as possible, safely, of course.

One of the worst side effects is my average blood pressure is 90/50. For an athlete, this would be a great strong heart. For a cancer patient, this means I don't have enough volume in my blood, created by things such as cells or fluids, to maintain a healthy pressure.

I drink plenty, at least 2 litres daily. Scratch that off the possibility list.

This is not a side effect of my cancer. It's a side effect of all the chemotherapy I've received. I've been taking some sort of therapy for almost five years straight now.

My 90/50 blood pressure is so low if I so much as bend over or squat down and stand I become dizzy, fearing I will pass out. This means my bp is even lower standing. I have symptomatic orthostatic hypotension. 

But if I'm starting at 90/50 how low can it go? Let's hope it's just 70/40 when I stand and get whoozy. It's around there when I sleep, but that doesn't leave my margin for error if I become sick and my BP plummets due to systemic vasodilatation.

I need to address these underlying issues for my safety.

Any lung problems I complain of, those are entirely therapy induced. GVHD is a side effect of a transplant. It can often be worse than the transplant itself.

My non related transplant was in Oct. 2008. Since March 2009 I've been battling my cancer and the effects of GVHD simultaneously.

The long term steroids needed to control my lungs also have the ability to suppress the good anti-cancer qualities of graft vs. host. I take steroids to fight the side effects caused by treatment and my cancer comes back, requiring more treatment.

It's a vicious cycle, one I've endured for five years almost continually now. There is nothing wrong with wanting/ needing a break.

The definition of insanity is doing the same thing over and over and expecting different results. With chemo I am essentially doing the same pattern over and over.

Studies show that in situations like mine, where the cancer is resistant and chemo is used for comfort, the longetivity isn't increased whether intervention is used or not. I'm trying to prove that study wrong. I think if left alone, my cancer would have killed me in March. Now, I think i continued, my chemo could significantly hurt me. Just good chemotherapy deaths and congratulate me that I feel well enough to take a summer holiday to enjoy my family.

Monday, June 20, 2011

Check Out The White Tigers!

Join Us This Friday June 24th @ 6pm
at The River Valley Technical College
in Claremont, NH

If All Is Well (and I hope it will be), I'll be there celebrating and selling works for Cancervivor Arts! Who doesn't want to show off they support cancervivors?

Part of the night is to use each person's individual station for education. It is also my hope to use this opportunity to discuss with other attendees the abnormally large population of blood cancer, severe bone marrow suppression, brain tumors, and very rare cancers that plague a 10 mile radius surrounding Claremont's Industrial Park, among which are companies known to pollute the environment with carcinogens. I am concerned (cancerned?), but I have been too sick to work to protect others from the suffering I've endured.  
We all have been touched by cancer, but how many of us are neighbors being hit with cancers?

In 2005 thirty-six (36) Physicians from Claremont petitioned the legislature to study the suspected increased cancer incidence; however, Claremont alone was studied. No "cancer clucter" was found. I'd like a repeat study using a 10 mile radius surrounding the suspected "ground zero" instead of Claremont. 

This will take a group dedicated to the cause. I believe it is worth the time.

Since the study was done, I was diagnosed in April 2006, but I wouldn't have been counted anyway. I reside over the border in Charlestown, NH, a mile from the facilities.

In 2007 I watched helplessly as a former colleague, Carol Snelling was diagnosed with leukemia and told she needed a bone marrow transplant.

She was only in her 50s. She was my neighbor. She also lived in Charlestown less than a mile from the Industrial Park. 

The following year, again, I watched in horror as a younger acquaintance, Ashley Jordan, was diagnosed with Hodgkin's Lymphoma at the age of 21.

Only 8000 people are diagnosed with Hodgkin's yearly in the US and 75% of these people are cured with ABVD therapy. 

This means of the 16000 people diagnosed with Hodgkins' Lymphoma in the United States in 2006 and 2007, only 4000 had a refractory form of the disease that required a bone marrow transplant.

Two of those 4000 people were Ashley and me. Both of us lived within a mile of one of each other. Both of us lived a mile from the industrial park. Both of us Lived in Charlestown.

I wish I could say the area was "only" three for three in consecutive years when our neighbors were given blood cancer diagnosis requiring a bone marrow transplants, but I can't.

The fourth year in 2010 another neighbor living within a mile of me and a mile of the industrial park in Charlestown was struck down with the same adult form of leukemia as Carol Snelling, whom he also lived within a mile of. He was also told he needed a bone marrow transplant, however this time the victim was only six. 

Andy Pomprasertte is lucky to have recently celebrated a year post transplant and is leukemia free, but not all of the four of us can say that. Not all of the four of us can speak at all.

Carol Snelling died of complications while undergoing her bone marrow transplant, and I am fortunate to be alive, but am still fighting my Hodgkins after two bone marrow transplants and five years.

These are not the only ones who have suffered from very early or very rare cancers.

My husband was diagnosed with colon cancer in 2008 at the age of 28. He lives within a mile of the industrial park. Another twenty something woman was diagnosed with a brain tumor shortly after graduating high school. She has lived within 1.5 miles of the Industrial Park most of her life.

Even more recently, another man in his 40s who did not live a life of heavy drinking or smoking, was diagnosed with Stage Four Pancreatic Cancer. He too lives within 1.5 miles of the possible "ground zero."

It is important that no one has to hear the words "You have cancer" but it's more important that we protect our neighbors, our friends, our loved ones, and ourselves from hearing it.
We have the unique opportunity to explore the possible cause of these diseases by banding together and creating a group with the common goal of discovering if there is a higher amount of cancer in this area, and if so, demand to know what is causing it so we can protect our neighbors, the men, women, and children of our community from suffering due to cancer.
If you are willing to help, please join us this Friday June 24th @ 6pm at The Relay For Life, River Valley Technical College, Claremont, NH to sign-up to join in helping, specifying what specifically you may assist with, and when you are available. If you can not attend this Friday but are still interested please email the above information to 
Also if anybody has information please bring that as well. Thank you.

And to End on a positive note, Come Even See the Very First
  White Tiger's Relay for Life Team!
Our donation page is:

Or if you'd like to give directly to a cancer patient in need of medical survival funds (AKA me), just use the donate button to the right or go to: