Check Out The White Tigers!

Join Us This Friday June 24th @ 6pm

at The River Valley Technical College

in Claremont, NH

For The 2011 RELAY FOR LIFE SURVIVOR'S LAP AND KICK-OFF

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 hill.stpierre@gmail.com 

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: 

https://secure3.convio.net/tacs/site/Donation2?idb=417577960&df_id=1008595&FR_ID=31230&PROXY_ID=923745&1008595.donation=form1&PROXY_TYPE=22

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:

https://www.paypal.com/us/cgi-bin/webscr?cmd=_flow&SESSION=vH5F31EIDnbFHkXIqyRYhk9KY9oXrPy45eblUiom-obFOQDAKyXTtK5EDKe&dispatch=5885d80a13c0db1f8e263663d3faee8d422be6d275c375afb284863ba74d6cdc

Staying on the wagon: How I'm recovering from Lung disease

You never know when the last time you do something will be.
You don't visit a friend thinking, "Well, I won't be coming here ever again. I should really look around  and enjoy each moment, the smells, and the sounds."
No one ever goes to their hobby room on the second floor to wrap presents or sew or clean and think, "I may not enter this room again for years. I may live in this very house, but getting to the the second floor will be as hard as crossing the Sahara desert."
But this happens.
Everything is left mid action, a shadow of a ghost that once actively played there. The room, the house, or even a desk is left telling a story of an unfinished project or a goal that was left unmet.
But no one ever knows when that time is coming. There is no way to prepare.
I didn't realize in August 2009 when I first started to experience shortness of breath that none of my activities would ever be the same afterwards.
I remember wanting so badly to coach soccer. I got out of my chair and showed one girl "hot touch" on the soccer ball, quickly jumping from foot to foot and placing my toe on the ball.
I stopped quickly. I felt my chest getting heavy and my throat closing in. I started to sweat. I started to see black and quickly sat down, thinking, "I absolutely can not pass out in front of the kids."
I didn't know then that I would not exercise for years afterwards or that "exercise" would consist mostly of rehab with small babysteps.

Bronchiolitis Obliterans with right sided pneumothorax
post bone marrow transplant.

 First, I had to overcome the immediate threat to my life with scans, biopsies, a pneumothorax only to finally diagnose bronchiolitis obliterans, or graft vs. host of the lungs from my second transplant, then I had to gain the strength to breath pain free, to cough, or laugh. I'd gone a long way from playing soccer.
I used to dance almost every night through the first years of my cancer, not only to exercise, but to keep my spirits up.
 With my new struggles, I had to start learning to walk with an oxygen tank at a pace I could sustain. I had to manage getting to the car. I had to learn to manage getting my son ready for school. I had to ask and train him to scrape the ice from my car.
I could hardly lift the 10lb. oxygen tank. I could barely lift my legs in the boots I'd worn for years.
I guess you could call this "exercise," but not by my definition.
I tried to find other hobbies to fill the void. I took a pottery class and threw myself into art, but even when still suffering from severe bouts of respiratory distress I'd push myself to at least pitch to Xander or pass the soccer ball. None of my new activities appealed to him like the sports we used to play, but the days of jumping on the trampoline or teaching him ball handling skills were over.
Or so I thought.
Today I FINALLY, after years, brought out my old "Flirty Girl Fitness" video! That is bonafide exercise, even though I didn't even complete the warm-up.
It's been a long road and a struggle that consists of more obstacles than just my physical problems from cancer, chemotherapy and bronchiolitis obliterans.
I had to face the psychological fear of losing control, losing my breath, having the world turn black and losing my faculties, possibly in front of my child, but I knew it was my only hope to enjoy life the way I wanted to.
The road to recovery began when I'd finally started to accept my state. I'd purchased a wheelchair. I bought a better bag to carry my awkward oxygen tank along with my medications and money, etc.
I knew I had farther down to go. I didn't want to go there.
With X as my motivation and an excited blessing from my pulmonologist and transplant specialist, who both said exercise maybe the only way to improve my functional activities, even though it would not improve my test results, I started slowly.
X and I would play "wall ball" kicking a soccer ball against the side of the house. I would walk slowly and kick then sit on the tailgate of my jeep. I didn't run, I didn't chase. If the ball didn't come directly to my feet, I would leave it.
Two kicks at the wall slowly turned to three then four. Then I started to take a couple steps sideways to move towards the ball, walking in a careful calculated manner. At this time I would start getting short of breath, but I'd stop and regroup.
I began to force myself to walk longer distances knowing that at some point I could reach exhaustion and collapse. I learned to take my body to a point I was comfortable with and then rest.
After a month- 6 weeks I could finally kick back and forth with some strength and I added a little hop to my step.
The first time I tried to "run" to the ball (that's means taking two quick, strong steps towards the ball) my leg gave out before I could make contact. I fell flat curling to avoid injury, but got up laughing.
I stopped for the day. I took a couple days off, but I got back on the band wagon.
I finally got to the point I could add a hop to my step. After 3 months, I could walk quickly. I could hurry without fear of passing out.
It was about this time I walked up my stairs to the second floor for the first time in years. I walked up and I did it without breaking into a cold sweat, gasping for breath and collapsing at the top. My legs felt like jelly. I felt shaky, but all of those old terrible feelings were trumped by my accomplishments.
 I started to work on my strength the beginning of June by doing things I enjoyed and wanted to do in everyday life. It was early October before I accomplished my one flight stair climb.
I'm proud I was patient with myself, that I listened to my body, instead of trying too much too soon and hurting myself or quitting from frustration.

I've always been a woman that enjoys activity. It relaxes me and energizes me in one. It allows me to focus and clear my head, leading me almost to a meditative calm so difficult to achieve during a battle with cancer.
Along with losing my breath I'd lost one of my few outlets, and now, with it returning, I'm again remembering the good it brings.
 Soccer season had to end eventually. By this point, my legs had regained a significant amount of strength, but my arms had been ignored. The first day X and I went to the driveway to play basketball I lifted the ball to shoot only to watch it float uselessly, not only below the rim, but below the back board.
AIR BALL.
X thought I just didn't know how to shoot and launched into a full scale lesson on proper form not realizing I was about to burst into tears.
"DAMMIT." I cursed,  "I was damn good basketball player and now my child thinks I don't even know how to take a proper shot. How am I supposed to teach him the moves I've been planning on. How will I teach him to dribble, to do his cross-over? How about hook shots and backwards lay-ups?"
 I wanted him to know how to dance with the ball and I wanted to be the one to teach him.
Again, I parlayed my sadness into motivation. After a week I could finally hit the backboard while shooting. Soon I was making close shots. Then it was on to lay ups.
This time though, unlike my early exercises with soccer, I was able to move my feet. I was able to run a little. And by mid-December I was able to teach him how to dribble fluently with both hands. By Christmas he'd perfected his cross-over and just yesterday he tried to pull out the behind the back cross over while playing.
All the while he thinks we're playing, I'm working to strengthen myself. I'm working to gain energy so I'll be able to participate in his life as long as possible.
I'm finally to the point I've ditched the oxygen.
The wheelchair is packed away. People have begun to forget that I even have lung issues, but I remember and hope I will always remember the excitement I felt when I could finally take a pain free breath or walk without losing my breath or go into buy milk for the first time.
 By celebrating each small accomplishment, by listening to my body and it's cues, I was able to manage my severe lung fibrosis and chronic obstructive pulmonary disorder. Now it's on to more activities and a happy, healthier, easier life.

Grey's Anatomy Has Nothing on Me

You all thought you were having fun, sitting at home on Thursday nights, checking out the drama at Seattle Grace. Well, I’m here to let you know, Grey’s Anatomy has nothing on me. Yes, the writers in Hollywood may not delve too far into the lives of patients beyond the hospital minus “Rebecca” and “Danny,” but they do have something right. Hot smart doctors are great. They are fascinating, and they are not a complete urban legend.
I used to joke that if you were going to be sick, you may as well have some fine doctors taking care of you. It’s a lot more fun to play doctor with someone who is attractive, and believe it from experience, patients could be half dead and still notice. I’ve been on both the receiving and presenting ends as nurse and patient. Maybe not half dead, but in a whole lot of pain, and it seems like you have to hit the genetic lottery to take care of me. Attractive and smart, my two favorite things, and if you can make jokes in the chemo room, it’s a bonus. Check out my case and point picture to the right.
This is Dr. G from DHMC, and believe it or not, I did not pick him to take care of me by his picture alone. He was on the list of acceptable doctors I received from a respected colleague. I picked my specialist at Dana Farber in a similar manner, by recommendation. I suggest most people in my situation ask their primary care doctors, nurses, other patients, or persons employed in the same facility about their confidence in the specialist. This can be surprisingly reassuring. Nobody to ask, see www.vitals.com to verify specialties and certifications. If you do not feel reassured by what you see, hear, or feel, a good doctor will not be offended by a second opinion. Peace of mind is priceless people.
On the subject of patient doctor trust, I read an article the other day that stated (gasp) doctors are people too! Like the celebrity pictures in “US” that shows celebrities doing “normal human things,” like grocery shopping, the author was proving, no, doctors are not demi-gods or superhuman. They are people just like us with, surprise, feelings. Here is some insight that might quell your fears.
Most people view doctors like I view mechanics. Patients often don’t have the education to question the decisions of their specialists, just like I would not know how to confirm what my mechanic is telling me is true. This causes a bit of fear among patients. I want to make it clear, most Doctors are not out to screw you for your money. They make enough. There is not some “miracle cure” somewhere in the world that they know about and are not telling you. These people dedicated years and years of their lives to fix your health problems. Most of them busted their asses and accrued hundreds of thousands of dollars, or at least tens of thousands of dollars, in debt to take care of us.
In general, people do not dedicate that much time to a cause only to turn around and refuse patients the very best treatment. Those doctors that work for insurance companies finding reasons to deny claims and make our lives difficult are an exception to the rule. Those doctors are mercenaries who have sold themselves out. There’s a special place for them you know where.
Yes, Doctors generally make some money, but not as much as our greedy wallstreet brokers, and Doctors don’t have the Fed to bail them out if they make a mistake. They have malpractice insurance at rates that could bankrupt a small private practice. Most, genuinely, want what is best for their patients. As a nurse, I gauged my effectiveness by the health and happiness of my patient, and any failure to adequately alleviate their problems was a personal failure. I think most health care professionals feel the same and are deserving of your trust.
If you are angry or frustrated with your situation, your doctors, your nurses, your lab techs, or admitting secretary’s (except a special one at Sloan) are generally not the people to take it out on. They are trying to help. Your anger is misguided and taking the path of least resistance. Take it out on your insurance companies. They are making huge profits on your suffering by denying you care. They’re taking your precious energy by making you fight with them for care you are rightfully entitled to. They are banking on you being too sick to fight and paying the bill. Post your problems here or check out http://www.nhcitizensalliance.org/programs.html (if you are a NH resident) for the correct people to complain to.
There are a few other places where I could point my finger for making navigating the health care system so difficult you need a PhD (or at least a MS because I have a BS and it’s still rough), but you’ll get to hear about those later,
At least you have me to fill the “medical drama” void you’ll feel between now and next Thurs, and as for Dr. G at DHMC, how could you NOT trust that face.

Introduction to me

This is me, as of December 2006, Bald and beautiful. Here is me now. Take a peek.