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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Sunday, May 31, 2009

Tea is the new Snob Drink

Wine move out theway. The days of being the drink of the elite are done. Evertything connassieurs knew is wrong and gone.
Reds come in sweet sparkling varieties that are served cold and white zinfandel is not the only grown up fruit punch for ladies’ evenings (Actually, I prefer white sangria, my personal recipe).
I know these styles of wine exist. I was just at a wine tasting this weekend that featured both the red and a reisling with no pomp and circumstance to sip, no swirling or sniffing involved, no swishing and spitting.

This would all look a little ridiculous drinking out of plastic dixie cups, and maybe it is part of the sexual avante gaurde revolution, but spitting is out of the question (at least at public tastings, dirty minds).
Wine has been getting a little bit of bad publicity for a while, especially after droves of soccer moms were getting busted in their mini vans with the kids in the car for non-other than drinking and driving (Oops).
Our playdate secret is finally out. Yes, we ladies who lunch do enjoy the occasional glass to get ourselves giddy and take the edge off parenting.
Hold the hate mail. I didn't say everyone of us.
I said some and articles in places like Newsweek and The New York Times spoke of this phenomena.
Apparently, women behave badly in their personal time, but without the golf/poker/softball outing, business lunch, or conference as an escape that some men enjoy the personal time is not independent time.
Moms multitask, apparently with the kids in tow.
So, with wine past its prime, where are people to go for the new uber elite social drink?
Tea is the new snob drink.
It’s no surprise, at least not to me, tea is taking over as the new socially acceptable pass time drink, especially with this new health conscious movement.
And it is a movement.
Whether you are fighting to stay healthy in American because you can’t afford to get sick or you’re fighting to stay healthy while already sick, either way, you are trying to stay healthy.
As nice as it would be to stay this is due to our increased consciousness of how we need to treat our bodies, I don’t think that’s true.
It’s not for me anyway. I’ve always been aware and loving towards my body and it’s health. Now, I just straight up can not afford to be sick much longer.
Many, many American’s are agreeing with me as they lose their jobs and see their health insurance, if not lost, cut back, or start receiving their monthly COBRA bills.
There is certainly a reason the acronym for this “gray area of health care” is called COBRA. This bill will take your head right off when you open it with one swiping motion and it is certainly lethal to your bank account and credit rating.
Really, what if someone told you that you would now only make two-thirds of your salary (from a lay off) and that you would need to pay a COBRA for health insurance at $1600 a month for your family. Then, if you get sick, this COBRA coverage for $1600 a month has a $4000 deductible.
I’m not making this up. These are real numbers, from real people. This is definitely some “funny math.”
Of course tea, with its long history of legendary medicinal properties is rising in popularities’ with the mom’s a twenty-somethings.
I’m talking it is now the drink of connoisseurs that requires ceremony prior to its drinking and strict preparation to qualify as “acceptable.”
This drink was once wine, now with the new health trend, it’s tea.
I spotted this trend while looking into information regarding tea as a phyto food (Fight ‘Oh food).
What I discovered is yes, many scientific studies from many countries show the benefits of tea, specifically green teas, but also some light teas but not often the black/pekoe types.
I have found some American studies recommending black teas, but their research is not as advanced.
I’ve read, frequently, that 2-3 cups a day of green tea significantly alters the way your body combats bacteria, viruses, etc.
I also read a USC study that green tea, a natural protease inhibitor, completely cancels any effect from receiving the study drug velcade.
Guess who tried velcade and drank a whole lot of green tea during the period?
Who would have guessed two products with the same mechanism of action in the body would not potentiate each other, but cancer one another out?
I wanted to take the green tea approach anyway. Velcade creeped me out.
Actually, Dr. Alyea and I butted heads about the velcade trial drug upon my signing the consent. He said yes, the drug was necessary. I said no, I didn’t understand the reasoning.
That is a story to tell later, but I chuckled just a little bit inside when I read I had completely undone the study work with velcade by drinking green tea.
Thankfully, velcade had given me some neurological problems associated with it’s administration (a common side effect I was not aware of) that manifested in an increased peripheral neuropathy and excruciating migraines.
These are now gone, and I do think it is due to the complementary approaches I have taken, such as drinking green tea, taking flax seed oil and fish oil. I also use magnesium glycoxilate, 600mg daily, for my migraines.
Any natural drink with this kind of power is bound to be vogue, and not just in health nuts, it’s trickling down to mainstream moms and church groups.
Tea is in.
It’s popping up EVERYWHERE, from mom play groups in Hanover, New Hampshire to church luncheons in New York City to promote advocacy projects (Holla Cheena).
There are hundreds of varieties. There are different methods of preparing tea for it’s maximum health benefits. It can be combined with herbs to potentiate the desired effect.
How much fun could a bored hermit like me have with making teas? The sky is the limit.
I have all ready started, picking blossom after blossom of dandelions (yes, the weeds) to make jelly and tea to research the long standing Native American belief that these “weeds” actually profide medicinal benefits such as liver detoxification.
As of two weeks ago, my liver enzymes have normalized. There was a significant period where I had increased liver enzymes that showed significant liver failure, or at the very least, the growth of a tumor in this area.
How great is that?
As if I need to make another point towards the benefits, but tea is completely socially acceptable among the ladies at playdates, and to be fair, stay at home dads.
Take it from a lady who lunches, the days of two bloody mary playgroups and margarita lunches are dwindling.
Teas are it in a big way.
I’m leaving now to play in my herb garden, hoping to whip up some fun, tasty, and health improving recipes this season.

Saturday, May 30, 2009


First things first, good news, Danielle has gotten a pancreas!
Yes, after years on the transplant list she was called and told she had on organ on Wedsnesday and called to surgery yesterday!
Having her get “the page” was one of the most exciting moments of MY life, I can’t imagine what it was like for her.
She was given the evening and called to surgery for transplant early Thursday morning. She was advised there was a 24-hour window for placement, which luckily, gave her and her family a couple hours to adjust, making some arrangements like daycare, etc.
I was able to run in and visit her in same day surgery after my appointments at Norris Cotton yesterday.
She was lying around in her johny, filling out paperwork, looking cool as ever.
Her husband, however, was sweating a little, leaning forward, eyes darting, and not quite his funny self.
Maybe he was nervous about something crazy, like, I don’t know, his wife going in for major surgery to put in a foreign organ?
Silly him.
Not only has she received her new pancreas (the surgery was on Thursday), it has started working all ready!
I didn’t realize this happened so fast.
The reason for her transplant was for control of her diabetes. She was selected as a candidate for this relatively new procedure at Dartmouth Medical due to her high patient compliance.
She tried everything to control this nasty chronic disease: exercise, diet, the gamet. She had been using an insulin pump but was still experience severe fluctuations in her sugars at times.
Yesterday, her sugars were normal! Normal all ready. YAY!
She’ll remain in the hospital about a week. She will probably be transferred out of the high acuity care unit tomorrow or the next day.
Everybody, be happy and think of Danielle today.
In fish fiasco news, the original Smokey has been replaced with a new version, also “Smokey.” This one is a deep blue/purple. It is feistier and livelier, and it survived its first night.
However, I have caught Josie, the offending cat, aka “Miss Priss,” peering over the bowl and licking her lips.
Xander didn’t take the news that Josie had snacked on his pet very well yesterday. He hollered and sobbed. Then he went straight to Nika, our dog, and advised her that Josie needed to be eaten.
X didn’t tell me how Nika responded to this request, but Josie is still prowling around the house.
Nike is just not that type of girl.
X wants to get rid of Josie now, but I have explained to him that Josie is part of the family, and we do not just kick our family out of the house when they misbehave, like “Ohana” in Lilo& Stitch (the Hawaiian word for family that means “no one ever gets left behind.”).

Moving on to me and my disease, It’s time to be very clear about my disease process.
I have been being asked a lot of very complicated questions recently regarding my health, and I want to make sure everybody has the basic facts before I talk about my possible treatment options in the future.
I have cancer.
I have had cancer.
My allo-transplant did not send me into a significant remission.
It is debatable whether or not it sent me into a remission it all.
It was best for my psyche and my healing that I thought I did.
This is a gray area in cancer care post transplant when all the potential beneficial effects of transplantation have not been seen.
Graft vs. Host disease is actually a benefit during transplantation due to it’s anti-cancer qualities.
It shows the donor’s immune system is working and working hard, recognizing yourself as a foreign body and hopefully killing the cancer in the process.
Dr Alyea is always saying, “If we could order a little side effect from the pharmacy, it would be some graft vs. host disease. . . . . . . “This statement was cute and true the first time.
After the fifth or sixth time of saying this, I told him no more writing orders for GVHD, it was making me miserable, and if he did, maybe he should be a little more specific about the ramifications and areas to hit in the order.
Just a suggestion.
That was about the time I was put on steroids.
Truthfully, it looks like my cancer never went away and that it actually returned in the context of my transplant.
This is very bad news if I can’t even achieve a remission during the process of significant treatment. That is one nasty, feisty, tough, resistant cancer I have in my body.
I don’t think it is as nasty, feisty, tough, and resistant as I can be when fighting tooth and nails for my life.
The fur will fly, hair pulling and scrapping is not out of the picture.
With this being the reality, I have been researching my treatment options.
I’ve written about Plan Y and going to the Klinik Im Alpenpark.
The actual schedule is this: On June 18 I will get my next diagnostic PET scan. Depending on the results of the PET scan, I will determine my next action.
If I am in remission, hooray! I’m going to hang around and keep doing what I am doing, living a nice simple country life.
If it is positive, I will start scheduling my treatment in Germany for the end of August.
I do feel a significant need to prepare for this possibility.
My husband is remaining “positive,” and wonders why I am so obsessed with planning this trip and making sure we have the means to attain this treatment.
I say I am being “realistic,” and that “God helps those that prepare themselves.”
It’s made communicating a little difficult.
There has been a little mismatch of expectations in my care between the two of us for years.
He is expecting, hoping, full heartedly, with no preparation for other possibilities for a full-on healing.
I think this is a set-up for devastation, and I don’t feel I have the time to wallow in depression for a week that my cancer is present if it still is.
Time is of the essence. I need to keep things moving, with every test, with every postive PET, I feel like I am taking one step closer to the end of my options.
I have been prepared with contingency plan after contingency plan after contingency plan for years. I’m worried about what may happen when I run out of these.
I have never really considered just hopping from American cancer trial to American cancer trial.
The first trial I participated in went so badly. I was so miserable. I certainly don’t want to feel like a lab rat.
There are always other countries, like India. I hear they have their own version of the American “miracle” Gleevac.
I could turn my disease into a whole globetrotting cancer adventure for a cure.
Some people back pack around Europe and Asia to find themselves in their twenties, I’m going to travel from clinic to clinic seeking the best care for the cancer patients of the world.
I certainly never thought I would do this as a patient, but I hope to use my experiences for everything they are worth. I am enjoying writing about my experiences and hopefully educating all of you about the process and feelings associated with our “situation.”
Transparency and the ability to be candid about any disease process is important to me. I think communication removes existing barriers to accessing the very best care.
Thanks for being my cheap therapy.

Friday, May 29, 2009

The Smokey Fiasco

On Wedsnesday Xander had recovered enough from his virus to have some energy, but not so much to go to school in the morning.
I decided to let him sleep in that morning and see how he was when he woke upe.
He woke up, saying he was hungry.
Good start, since he had been throwing up for the past couple days and hadn’t eaten anything.
After being spoiled with spaghetti-o’s for breakfast, he was up and bounding, using all that energy he hadn’t for the past several days.
He played on the Wii for a while on the game we had gotten him while he was sick, but eventually he started to putter and get into everything.
He was jumping from the floor to the bed, doing backyards flips,running up walls.
I just couldn’t let that energy go. We had a messy house. We had loads and loads of laundry.
“Xander, I’ll pay you if you fold that laundry.” I said to him.
“Two thousand dollars?” He said, his going rate, starting the negotiations high as usual.
“I don’t think so. I’d like two thousand dollars to fold laundry.”
“Hmmmmmm, how about one thousand?”
“How about you try again.” I said.
“I want a pet.” Xander stated.
No way, I thought. This negotiation thing is getting ridiculous. I don’t know if we should have encouraged this.
“You all ready have a dog and a cat. That’s what you get.” I said, matter-of-factly, but then I thought about it.
A fish. I wanted a fish. I used to have a beta fish and those were pretty andpeaceful.
“Okay, Xander” I said.
His eyes perked up immediately, with the twinkly of childhood wonder.
“If you fold all this laundry in an hour and then go to school for the afternoon, because you’re feeling so much better, without complaints, then we will get you a fish this afternoon.”
“Yes! Yay, mommy, thank you.” He squeled.
We immediately started with a folding lesson.
Now, this 6 year old boy nows how to fold. He has been folding since he was two when he wanted to hurry up and get to FL for vacation, but I was taking this opportunity to perfect his skill.
Of course, he did fold about 4 loads of laundry, socks and all, in an hour before going to school without complaints.
We were off to get the beta fish that afternoon.
We made a little vase with rocks and shells in the bottom for “smokey’s” home.
We ran to the pet store to pick out his new pet.
He chose a redish-blue medium size fish that was floating around peacefully and brought him home.
Now, it’s Friday morning. I woke up early, and Smokey’s home has been tipped over, the water spilled all over the counter.
Our cat, Josie, has eaten Smokey all ready.
I don’t know how I’m going to explain this one to X when he wakes up.

Wednesday, May 27, 2009

Fleeing Hogder Returned

The Thirteen year old Hodgkin's Lymphoma patient that fled with his mother after a court ordered mandatory chemotherapy has been returned, voluntarily, by his mother.
Since his return was voluntary no crimincal charges will be made against the mother.
Maybe they just wanted to go on a quick vacation together before starting a nasty route of chemotherapy?
Jokes aside, this is a very important example of the fear associated with diagnosis and how it affects not only the patient but the family involved.
In this instance, not only was the family extremely involved, but the judicial system had to be used to ensure the child received life saving standard care for Hodgkins, without which he had a 5% chance of survival.
What human instinct exactly would make a mother run with her child for their protection when the odds of survival without traditional therapy is 5%?
It seems paradoxical. It seems like a huge miscalculation of the mother's instinct to deny what is clearly life preserving care.
However, like most things, how they appear to be are probably not how they actually are.
This mother presents a devastatingly strong example of the fear associated with the diagnosis of cancer and it's treatment.
Her fight or flight instinct was tagged to save her child by protecting him from the medical establishment.
What I have heard and read publicly,as I am not closely familiar with the case, is that the parents were knowing and accepting of their child disease and diagnosis of Hodgkin's lymphoma. They were not denying him treatment because they wer in denial he needed treatment.
They were refusing treatment, because they felt their route was either better or safer for their son. This thought motivated the mother to move a sick child from a comfortable home he knew in hopes of accessing the best treatment for him.
No person can judge or shun those actions.
However, looking at the big pictire, beyond the snac=tching, running, and denying treatment red lighted for the media, is a clear, common problem among families' facing cancer.
It is the fear that the medical system can not really handle us. It is the fear that our best specialists really have no idea what they are doing.
This fear is potentiated by the extreme powerlessness we are suddenly feeling over our own bodies or in this istance, the body of a child she has raised, fed, and protected for thirteen years.
How scary to suddenly be told that their is no longer anything you as a mother can really do to help aid in your child's fight against cancer. How terrible to be told that your child's only chance of survival resides in a medical system thta she appears not only to be downright suspisious of but is plagued with fear regarding the care they give.
What this woman and family needs is some empowerment, some guidance, something that says, "Yes, our ideas can coexist together in harmony for the betterment of your son. Chemotherapy is a starting point that we administer here at the hospital, but there are a plethora of other methods you can take has a parent to ensure little Daniel will be as well as he can possibly be during the treatment and survive to live a long healthy life."
I think if the two opposing positions in healthcare, the natural vs. the standard, were allowed to coexist in some manner the fear of traditional treatment would be lessened since paatients and families are no longer rendering complete control of a loved one, often a child, to a professional team of clinical strangers.
For more information about Daniel read:

Back To Reality

*This was meant to be posted yesterday morning. I guess I had a little more trouble than I though tI would delving back into reality. You'll read why in a second. Happy week everyone***
I’m getting back to life. I’m getting back to reality.
Or so I thought.
My little trek to “The Farber” last week through me for a little loop.
I guess that’s an understatement, because my brain is still whirling wondering where this or that piece of writing that was so good and I really wanted to share yet.
I haven’t made the final decision whether life in a notebook and pen world was easier than my now three writing technology (HP laptop, MAC desktop, and blackberry curve) that can be accessed from everywhere and anywhere.
I think I’m just not quite as educated as I need to be in technological organization.
I need a Jil fix. I need some Jilly and Hill time.
Everybody, in today’s world of ever changing modern technology, should have a Jill to consult to use your blackberry, IPhone, whatever to it’s full capacities.
Once those babies get going, there is no going back.
Yes, I am in desperate need of Jill and Hill time.
But not today, because I’m trying to get back into the swing of life, which has met some minor road blocks.
Thanks to the steroids I felt well enough to do something crazy, something not-so-Hillary-like recently. I was feeling so well that I made advanced plans.
Unfortunately as a side effect of my minute to minute health changes I can no longer make decisions regarding the future.
This has been extremely hard for me to cope with, since I am a Type A, meticulous, “planner.”
I like an idea of how things are going to go, how they’re going to go there, and when they are going to do that.
My disease has certainly robbed me of this personality trait I held so close to my heart and my inner self. Being organized, aware, and prepared was a cornerstone of who I am.
To lose this aspect of myself was devastating.
It also has ben incredibly scary because I associate it, not with just a change in mental capacity, but a decline.
I’M LOSING MY MIND!!!That’s how I’ve been reacting to this side effect.
I know, I know, it’s a side effect.
It’s certainly a very well, understood, highly studied phenomena (sarcasm). The ailment has been apply named “chemo brain,” maybe by a patient.
Hopefully, they never start calling it “Hilary Brain” then I know I;m really screwed, because I have become the primary textbook example of flakiness and lack of long term planning, failure in upper cortical function and organizational behavior.
I never did get those Doctor’s that discovered a terrible disease, and then so proud of their discovery, named the misery after themselves.
Did Dr. Alzheimer really wanted his legacy to be images of declining senior citizens singing out windows in the darkness of the night, running down halls with their knickers around their ankles, or crawling out of bed breaking hips? I don’t think so, but that’s what he got.
Be careful what you wish for when you’re looking for infamy.
So I said I was getting back to reality, but the truth is the plan was I was supposed to be well enough to aid my poor mother in her recovery from a hysterectomy which took place last Tues. when I was an inpatient.
Then, of course, because I was discharged a magic wand wasn’t raised and my gastroenteritis was still bothersome just manageable.
Thursday was a day of relative health, but I think that was more the adrenaline kicking in due to the steroids and trying to make up for lost time.
Then Friday, the creeky, squeaky talkative tummy started as a nice friendly warning that the runs were coming.
Yes the runs, with gas so bad I couldn’t even get away with blaming it on the dog, my son, or my husband who has crohn’s disease and is notorious for some of he worst smells humanly possible.
Immodium didn’t work. Then I’d become nauseas. I’d take some ativan because it is most effective. It was also what I had on hand.
Then I would fall into a relaxed haze or a dreamless sleep in comfort. That was how the weekend went, back and forth between bottles of pills trying to prioritize what I get could into my system and keep into my system (because if I were to take everything prescribed and holistic I certainly wouldn’t have held any of it down), and then enjoying the peaceful haze in between.
Which was actually great, because despite how sick I felt, I got to enjoy time with Yanellie, Chris, and their two kids, Isaiah (4) and Victor (3).
Yanellie is a best friend cum sister from college who I love dearly.
She is really one of those beautiful rare friends that fits perfectly within our family. She always have.
Despite the fact that she is Guatemalan and I am French Canadian (or so I think, It hasn’t been confirmed with the my donor), we are always asked if we’re sisters.
Maybe it’s in the attitudes. Or maybe it is in the fact that we try to spend holidays together. It’s been great to have met her my freshman year of college, at a swim meet, talking at McDonald’s and bonding over our love of Appletini’s (the “in-drink” of the moment for New Yorkers) to being big grown-ups with homes, families, and businesses.
It’s been great being with eachother as we’ve evolved into woman. You can check her out. She’s on blogger to. See www.
What a great name is that? Kudos for coolness Yanellie and Chris. I do have to say that they are one hip couple.
I miss you guys all ready.
Now, the plan for today was to relax, get back to get into the grove of life, pick up the household, and tie up some loose ends in some projects.
No such luck. As usual, I’m just going with the flow, enjoying the ride of the tide.
Poor Xander threw up in the middle of the night on Saturday.
It turns out my gastroenteritis was probably not solely from McDonalds and a binge on too fatty food. It was probably a virus that has been ravaging the local school systems.
Xander now has it. It starts with vomiting and an upset tummy then progresses to diarrhea, which he got over yesterday with the help of immodium.
But since this is our life we are talking about, and it can never be as simple as just a little virus hanging around the house, when X woke up this morning he was complaining about a sore throat.
He doesn’t have a fever, but upon inspection his tonsils are swollen and there are some tell-tale white patches hiding far in the back.
He’s not bounding around the house asking to go outside and jump on the trampoline or even low key activities that he loves like counting his change and doing his spiderman math books. He is snuggling, comfortably, on the couch with me, still in his pajamas, watching tv and playing matching games on his DS, QUIETLY!
He definitely doesn’t feel well. This is not my child. He is also doing something very unxanderlike. He is sitting still.
He has an appointment to be checked at 10:40. Thankfully, the surgery is all ready planned to have his tonsils removed due to these frequent strep infections.
On June 9, 2009 he’ll be undergoing a tonsillectomy as well as having another set of tubes placed in his ears since an effusion (liquid behind his eardrum) in his right ear has been keeping him from hearing properly.
This has been caused by frequent ear infections, which without tubes and frequent support, would go on until he is 8-12 years old when the muscle in the ear matures enough to change the angle of the ear canal so it can drain that pesky fluid itself.
Except, there is a lot of learning to be done between 2 yers old, when these inconveniences started and twelve when the anatomy may just finally decide to fix itself.
Good thing we found dr. Ryder in Charlestown so early on. He has been a fantastic professional to work with. Claremont and Springfield, VT are fortunate to have him as an Ear, Nose, and Throat Doctor.
He also performed my very first cancer biopsy.
Awwww, memories. He had the unfortunate duty of being the messenger of the “C” diagnosis, but that incision he made was beautiful. I do not have any scar remaining and he incision he made was significant.
Dr. Ryder is certainly an artist at what he does. HELLO, of course he is, I trust him with my son and a knife to my neck.
So those are the plans for the day, just to maintain the status quo and get my baby healthy! Get us all mostly healthy!

Monday, May 25, 2009

Memory Day

Memorial Day 2009
Happy Memorial day. Can’t we just turn this into a happy memory day? We could make memories of all kinds and not just memorialize the dead and passed, but make memories with their family and loved ones.
That’s what I am planning on doing if my body holds up and all can hold all that belongs inside in, like my food waste.
No one wants to see that coming out at the community BBQ.
Actually, today is a field dedication to a long time family friend and loved one, Dave Detore.
Our family, The Detore’s, and The St.Martin’s all grew up together.
I guess the three fams banded together early when they all realized they had daughters the same age.
Those daughters were Heather and I, Katie, and Nicole. The St.Martin’s added two more subsequent children, Jamie, and Elizabeth while Nicole remained the one and onl child of Dave and Deb.
Our family also added Patrick to the mix who was a little younger than Jamie, so we all had quite the crew to get together for important, fun, family holiday dates like New Years Eve were sparklers and firecrackers were required.
Then of course there were the yearly camping trips to Maine with the three families where we’d enjoy roasting marshmellows over the fire and stories from “The Moose Callair” with raging sound effects and the whole nine yards.
Of course here were always meals with the options of Tabasco sauce, hot, hotter, and burn your face off to choose from.
Generally, we girls stuck to the beach and watched the fine boys pass by.
We have lots of pictures, and lots of memories, from exploring Maine togther all those years.
We were taught how to eat a lobster, properly, and not allow any portion of it’s precious meat and juices to escape.
We were told to suck every last once of goodness out of those tiny ctustacean legs they have.
I can easily say we may have eaten our way through Maine one weekend every summer throughout our childhood.
We also were able to run around the coast like tourists checking out the best, and the worst, that Maine had to offer.
Yes, Maine is beautiful with its rocky jeddies and sandy beaches full of wildlife and wonder, but the concrete and streets are just as much as an adventure.
For a country girl like me, it may come as a surprise, but I was always a little more fascinated with the human species than what could be found in marine biology.
People watching, sitting on the bench, looking over the ocean, the breeze knotting my hair, bathing in the sun with a book or just thinking, was always my favorite pass time.
Maybe this is all where my innate need to go antiquing or bargain shop for beauty began.
Who knows?
But I do remember one time very clearly when one Maine Tourist because very unhappy with my mother over a parking spot.
Awww, yes, a parking spot, I think everyone in America can relate. You’re in an area too populated for its own good during it’s most populist time and there are ten different cars strolling carefully row to row just hoping they are going to be THAT CAR that comes upon someone pulling out so they can sneak right in and get on with their sightseeing.
While, in our incidence, there were two cars that found the one spot where the car was just trying to leave their destination, and guess who beat the other driver to the spot.
You guessed right, my mother. Go momma!
The two mom’s parked the minivan and the six kids came bounding out the door ready to start our adventure when this man driving the losing pick-up pulls up, blocking us in (like we didn’t want to be there, ok, buddy), and starts cursing and hollering at my mother.
Excuse you, Mister, I don’t think so. Where is his mother and who taught him those manners.
This was a pretty clear example of where chivalry was absolutely dead. Not only did my mother have rightful access to the parking spot, but she was also touting around two families, which included six kids all under the age of ten.
But he just had to make a scene, because he was a big man and his ego had been bruised by a better driver in a minivan that was making him wait an extra 20 minutes to find a parking spot so he could chug some more beer.
You can probably see where this is going.
He threatened my mother. He threatened to slash her tires. He threatened to smash up her car if she didn’t move, and like my mother was and always has been, she laughed at him, said “just try it” and walked away with all of us and the kids.
You can imagine how that went over with big macho, not to be outmanned by a mom driving a minivan, which did I mention had 6 kids in it under the age of ten?
The parking lot bully tracked us down while we were leisurely window shopping and having a grand old time. He cornered my mother and got up in her face like he was king of he beach and ruler of the parking lot. His arm was in the air like he was going to hit her. . . . in front of all 6 kids.
What a nasty monster.
I remember standing paralyzed not knowing how to address the situation when Heather stood up and stepped in the middle of this raging man and my mother.
I know what she was thinking, “What, exactly, is this angry man going to do in public to a ten year old?” and that is exactly what she based her actions on.
You go, Heather, you have always been one tough chick standing up for what you believe in, even at ten when a nasty man was trying to hit our mom.
I don’t remember exactly what she said to him, but it I think the presence of a petite, preteen, a complete stranger, feeling the need to physically protect her mother completely unnarmed him.
Woman beaters are cowards. I can’t imagine anything scarier to a cowardly woman beater than the next generation of women in the form of a cute, 80lbs. soaking yet child stepping up to kick his ass if that is what it is going to take to protect her mother.
He backed off really quickly, and Heather was a big hero.
Two ice creams for her that day
I hope that man remembers her and knows she is all grown up now with friends who are just as strong and courageous as her, willing to stand up and fight for what is right and decent.
As bad as that childhood memory of Maine my sound, it wasn’t.
It was more of a turning point. It was a right of passage.
We traveled to extend our surroundings, our boundaries, and therefore our culture and understanding.
This is why I continue to enjoy traveling today and bring Xander and Alexis along as often as I am able.
I want them to experience the world under the safety net of a family and family events so they can learn that outside their immediate surroundings are not so different.
I want them to know that though mountains, borders, barriers, and oceans may separate people we all have some basic, fundamental, human intricacies that we share under the realm of humanity.
Our trips to Maine continued through junior high and began to peter off in high school when sports camps took over our August free time, but the memories and the lessons are still there.
Since those days, life has happened. Both Dave and Peter have passed away. Charlestown Primary School's softball field is going to be dedicated to him today for his years of work and loyalty to the school and sports in our area. Peter lives on through his boisterous personality we swear has taken over my parents cat, Oliver, and in the good deeds of his children, Katie, who just graduated from Keene State College a couple weeks back, Jamie my favorite computer tech support man (beside you Jon, of course.), and Liz, his youngest who was only 13 years old when he passed of cancer.
Liz has been a wonderful help to me in my advocating endeavors providing never ending support and having helped make the basic design frame for Baldies' Blog.
We are so lucky to still have them all in our lives today.
Here is to making more happy memories. Happy Memory Day.

Friday, May 22, 2009

20 Cancer Symptoms Women Are Likely To Ignore

FINALLY, an article that covers the very rare and insidious symptoms of cancer that commonly effect woman.
In general, I have found that education regarding symptoms of concernin highly visible magazines, like Red Book, Woman's Day, or Cosmo, provide very surface level, basic information that does not help a person translate a serious symptom into a possible disease process.
Well, here we go, this one does the best so far, delving into symptoms to be aware of while you may not necessarily be labeled "at risk" or be receiving routine screenings.

Content provided by:>1=31025

20 Cancer Symptoms Women Are Most Likely to Ignore
By Melanie Haiken, senior editor
There is also an article entitled "25 Cancer Symptoms Men Are Most Likely To Ignore." This article can be found at
I recommend everybody read these to increase the awareness of how cancer presents and develops, since it is often a slow process appearing with symptoms that can easily be waived as normal aging or due to lifestyle.

My best advice, for everybody, do not allow this to alarm you. Just because your two and five year old have been running around and you had to intervene in the hairpulling and you're bruised and tired today does not mean you have leukemia, but if your gut instinct says something is wrong, you are the expert on your body, stand by your instincts.

Routine tests like pap smears and mammograms are important, but don't rely on tests alone to protect you from cancer. It's just as important to listen to your body and notice anything that's different, odd, or unexplainable. You don't want to join the ranks of cancer patients who realize too late that symptoms they'd noticed for a long time could have sounded the alarm earlier, when cancer was easier to cure.

Here, some signs that are commonly overlooked:

1. Wheezing or shortness of breath
One of the first signs lung cancer patients remember noticing when they look back is the inability to catch their breath. "I couldn't even walk across the yard without wheezing; I thought I had asthma, but how come I didn't have it before?" is how one woman described it.
2. Chronic cough or chest pain
Several types of cancer, including leukemia and lung tumors, can cause symptoms that mimic a bad cough or bronchitis. One way to tell the difference: The problems persist, or go away and come back again in a repeating cycle. Some lung cancer patients report chest pain that extends up into the shoulder or down the arm.

3. Frequent fevers or infections
These can be signs of leukemia, a cancer of the blood cells that starts in the bone marrow. Leukemia causes the marrow to produce abnormal white blood cells, which crowd out healthy white cells, sapping the body's infection-fighting capabilities. Often, doctors finally catch leukemia in older adults after the patient has been in a number of times complaining of fever, achiness, and flu-like symptoms over an extended period of time.

4. Difficulty swallowing
Most commonly associated with esophageal or throat cancer, having trouble swallowing is sometimes one of the first signs of lung cancer, too.

5. Swollen lymph nodes or lumps on the neck, underarm, or groin
Enlarged lymph nodes indicate changes in the lymphatic system, which can be a sign of cancer. For example, a lump or an enlarged lymph node under the arm is sometimes a sign of breast cancer. A painless lump on the neck, underarm, or groin can be an early sign of leukemia.

6. Excessive bruising or bleeding that doesn't stop
This symptom usually suggests something abnormal happening with the platelets and red blood cells, which can be a sign of leukemia. One woman with leukemia described bruising in strange places, such as on her fingers and hands, as well as red spots on her face, neck, and chest. Another noticed bleeding gums. The explanation: Over time, leukemia cells crowd out red blood cells and platelets, impairing the blood's ability to carry oxygen and clot.

7. Weakness and fatigue
"I kept having to sit down at work, and one night I was too tired to drive home," said one woman in describing the fatigue that led her to discover she had leukemia. Generalized fatigue and weakness is a symptom of so many different kinds of cancer that you'll need to look at it in combination with other symptoms. But any time you feel exhausted without explanation and it doesn't respond to getting more sleep, talk to your doctor.

8. Bloating or abdominal weight gain—the "my jeans don't fit" syndrome
While this might sound too common a phenomenon to be considered a cancer symptom, consider this: Women diagnosed with ovarian cancer overwhelmingly report that unexplained abdominal bloating that came on fairly suddenly and continued on and off over a long period of time (as opposed to for a few days each month with PMS) is one of the main ways they knew something was wrong.

9. Feeling full and unable to eat
This is another tip-off to ovarian cancer; women say they have no appetite and can't eat, even when they haven't eaten for some time. Any woman who experiences noticeable bloating or weight gain numerous times (the diagnostic criteria is more than 13 times over the period of a month)—especially if it's accompanied by pelvic pain or feeling overly full—should call her doctor and ask for a pelvic ultrasound.
10. Pelvic or abdominal pain
Taken by itself, pelvic pain can mean a lot of things. In fact, because it's a common symptom of fibroids, ovarian cysts, and other reproductive tract disorders, doctors don't always think of cancer when you describe pelvic pain. Make sure your doctor looks at all possible explanations and does a full exam, since pain and cramping in the pelvis and abdomen can go hand in hand with the bloating that often signals ovarian cancer. Leukemia can also cause abdominal pain resulting from an enlarged spleen
11. Rectal bleeding or blood in stool
"I thought it was hemorrhoids" is one of the most common things doctors hear when diagnosing colorectal cancer. Blood in the toilet alone is reason to call your doctor and schedule a colonoscopy.

12. Unexplained weight loss
If you notice the pounds coming off and you haven't made changes to your diet or exercise regime, you need to ask why. Weight loss is an early sign of colon and other digestive cancers; it's also a sign of cancer that's spread to the liver, affecting your appetite and the ability of your body to rid itself of wastes.

13. Upset stomach or stomachache
As simple as it sounds, a good old-fashioned bellyache is what tipped off a number of lucky folks, whose doctors ordered ultrasounds and discovered early that they had tumors on their livers. Stomach cramps or frequent upset stomachs may indicate colorectal cancer; many cancer patients say their doctors thought they had ulcers.

14. A red, sore, or swollen breast
Everyone knows to check for lumps in the breasts, but too often overlooked are symptoms closer to the surface, which can indicate inflammatory breast cancer. Some women described noticing cellulite-like dimpled skin on an area of the breast. Others noticed that a breast felt swollen, hot, or irritated. Red or purplish discoloration is also cause for concern. Call your doctor about any unexplained changes to your breasts.

15. Nipple changes
One of the most common changes women remember noticing before being diagnosed with breast cancer is a nipple that began to appear flattened, inverted, or turned sideways. "My nipple started looking like it was turned inside out," said one woman. In addition, inflammatory breast cancer also causes nipple problems, such as itchy, scaly, or crusty skin on the nipple— so take any nipple changes seriously.

16. Unusually heavy or painful periods or bleeding between periods
Many women reported this as the tip-off to endometrial or uterine cancer. Unfortunately, many women also said their doctors weren't responsive, overlooking or misdiagnosing their complaints as normal perimenopause. Ask for a transvaginal ultrasound if you suspect something more than routine heavy periods.

17. Swelling of facial features
Some patients with lung cancer report noticing puffiness, swelling, or redness in the face. The explanation for this is that small cell lung tumors commonly block blood vessels in the chest, preventing blood from flowing freely from the head and face.

18. A sore or skin lump that doesn't heal, becomes crusty, or bleeds easily
Most of us know to watch moles for changes that might indicate skin cancer. But other signs, such as small waxy lumps or dry scaly patches, are easier to miss. Familiarize yourself with the different types of skin cancer—melanoma, basal cell carcinoma, and squamous cell carcinoma—and be vigilant about checking skin all over the body for odd-looking growths or spots.

19. Changes in nails
Unexplained changes to the fingernails can be a sign of several types of cancer. A brown or black streak or dot under the nail can indicate skin cancer, while newly discovered "clubbing"— enlargement of the ends of the fingers, with nails that curve down over the tips—can be a sign of lung cancer. Pale or white nails can be an indication that your liver is not functioning properly, sometimes a sign of liver cancer.

20. Pain in the back or lower right side
As vague as this sounds, many cancer patients say this was the first sign of liver cancer, known as one of the "silent killers" (another is ovarian cancer). Breast cancer is also often diagnosed via back pain, which can occur when a breast tumor presses backward into the chest, or when the cancer spreads to the spine or ribs.

Thursday, May 21, 2009

Another Mini-Vacation at DF Done!

Another mini-trip to Dana Farber is wrapping up, hopefully.
I’m always skeptical about announcing that I am going to be discharged. There are too many variables in the process, too many “what ifs,” and too many possible problems that could occur between when I receive word that my discharge plan is for today and when I actually, physically walk or wheel out the door into independent territory.
I am finally at a place where I am no longer scrambling for the door, rushing discharge.
I’m accepting my surroundings and enjoying them as much as possible.
The staff here at Brigham and Womans, where the inpatients sent by Dana Farber are housed, and the team from Dana Farber have been fabulous and have done all they could to make the stay as smooth as possible.
They have worked hard and well together to collaborate for my needs, such as the many, many medications I take to symptomatically control my graft vs. host.
These are sometimes notoriously difficult to get from the pharmacy and it does require some patience on the patient’s part. My restasis, the cyclosporine drops for my eyes, the decadron mouth wash, and the bentomycin lotion were all part of the problem meds.
I shouldn’t even call them “problem meds” though, since they are as needed medications to help me continue to be as comfortable as possible in the management of my post transplant GVHD.
Everybody has worked so well with me, helping me to obtain all the medications necessary for my comfort, but also in working slowly, patiently, with me towards eating again at a pace guided by signals sent from my body.
Again, we are all not sure exactly what the problem I was admitted for was. It is being labeled a gastroenteritis.
I received levaquin (an antibiotic) intravenously for the infection I definitely had, since I spiked a fever of 101.6 as one of my presenting symptoms.
It is a possibility, and what we’re assuming, is that the major breach of my diet by deciding to include a McDonald’s crispy chicken ranch BLT with a full large order of fries and some left over (but within the general safe time limits for seafood, 24 hours) seafood chowder was probably a little too much fat for my liver, and body, to handle and digest.
One of the theories behind my strict diet is to protect my liver from having to do anymore work than necessary during the breakdown process.
The breakdown process includes “enzymes,” which play the primary role in dismantling the food into it’s different purposes.
However, without using these enzymes consistently, theoretically your body starts to do away with them all together.
The body, the all-time, super power machine, evolves realizing that things such as, in my incidence, processed foods, excessive fats, red meats, dairy, heavy creams, etc., are no longer being ingested and no longer need to be digested so the enzymes disappear.
This is why vegetarians may feel sick after their first bite of a hamburger. Their body has purposely forgotten how to break down the food, and this causes the person to feel ill, wanting to get rid of what the body feels is now a nasty, foreign substance.
I think this might have happened to me. I decided to have a diet cheat day in a big way and my body decided to revolt in a big way and say “hell no, that does not belong in here.”
My body said it loud and clear with sweats, fever, vomiting, and severe abdominal pain.
It is all part of this great nutritional theory though. Whatever I’m doing seems to be working. My body is rejecting unnatural food with violent reactions to keep me in line.
Scientifically, my liver enzymes have normalized!!
Here is a possible, proven, scientific reasoning for the decline in my liver enzymes to normal levels: it could be the prednisone working its magic.
With my graft vs. host disease more undercontrol, the pressure on my liver to perform is not causing the dire stress that resulted in the increases of the enzymes.
However, I have been giving my liver a lot of love.
I am using acupressure and chiropractic to gently guide my liver into functioning at it’s maximum healthy capacity with the assistance of Dr. Klemas at Charlestown Family Chiropractic.
I missed my weekly appointment due to the sudden hospitalization. I’ll be calling to make it up.
I massage a space at the base of my neck. Along with all the scientific areas of studies that have interested me throughout my life is that of phrenology.
Phrenology is the study of reading heads. It states that the shape of a person’s head can give great insights into their personalities.
Believe me, this is just plain old fun knowledge to have when you need to spend time in the cancer center where bald head after bald head passes you by.
I’ve thought on many occasions how much fun it would be to have a phrenologist hang out by the waiting room so patients can consult them while in between appointments.
Some people get their palms read, sometime massages are available, I say bring on the head reading.
And yes, I studied this long almost lost science/art since junior high as part of my understanding anatomy for art phase.
Now, I rub a special area at the base of my skull to stimulate the liver.
I’m just giving my liver some much deserved love. It’s a resilient organ, but in my case it needs all the help it can get.
Yesterday, I was finally able to ease some food in, starting with fruit juice and broth (clear liquids) which did incite some nausea that had to be treated.
I stepped back. Took a nap. Did some work. Enjoyed great company. Thanks for visiting Heather and Killy! I’m lucky to have you near by.
Also Carol Orichio, the stem cell transplant inpatient case manager stopped by. It was exciting to see her again. She’d apparently googled herself during a period of her own recovery and found her name on my blog!
I was worried I was in trouble for a second, but couldn’t imagine I had said anything negative. She was featured in a posting regarding how patients can access services when first coming to Dana Farber for treatment.
She came with a great poster outlining the role of case manager and the roles of all other professionals within the hospital and how they intertwine for collaboration.
She certainly did a fabulous job, and if I didn’t say it before, I’m saying it now, The Transplant Team here is lucky to have her.
Hopefully, at some point, I will be in a position to work alongside her and the others who have treated me so well.
That, of course, will only happen after I’ve completed my own medical journey (or Germany) into a lasting remission.
At least for now hopefully I can be used as a guidebook patient case study. I hope I still have that too offer.
The plan for today is to relax, continue eating gentle healthy foods, like a garden salad, fresh fruits, a turkey wrap with lettuce, tomato, and hummus with lots of water and cranberry juice to drink.
I’m keeping the gingerale close by my side too.
Then Melissa and Dr. Alyea will swing by to see me so I will not have to go to our previously scheduled appointment tomorrow, and life will return to my own personal normal again.

Wednesday, May 20, 2009

Hodger On The Run

This story is very saddening to me and exemplifies the fear that exists in people regarding treatment of cancer, specifically in this case Hodgkin's lymphoma.
My case of my resistant Hodgkin's lymphoma is rare. The cure rate for the disease is 90%. Seventy-five percent of the time Hodgkin's is cured with a simple round of standard ABVD.
Any diagnosis of cancer is scary and daunting.
Please read how it has affected one family in The United States:
I have also copied the text below for your perusal:
NEW ULM, Minn. - The man authorities believe could be with a Minnesota teenager who ran away to avoid chemotherapy did the same thing more than a decade ago in Massachusetts.

Officials believe Billy Joe Best could be traveling with 13-year-old Daniel Hauser and his mother. The Hausers allegedly fled New Ulm, Minn., after a court-ordered medical exam showed his Hodgkin’s lymphoma had worsened.

In 1994, 16-year-old Best ran away to avoid having more chemotherapy to fight his Hodgkin’s disease. He returned after three weeks in Houston when his parents promised they would not force him to have the treatments.

Best has claimed his cancer was cured by natural remedies. His parents, Sue and Bill Best of East Bridgewater, did not immediately return a phone message.

Daniel Hauser and his mother, Colleen Hauser, apparently left their southern Minnesota home sometime after a doctor’s appointment and court-ordered X-ray on Monday showed his tumor had grown.

Brown County District Judge John Rodenberg, who had ruled last week that Daniel’s parents were medically neglecting him, issued an arrest warrant Tuesday for Colleen Hauser and ruled her in contempt of court. Rodenberg also ordered that Daniel be placed in foster care and immediately evaluated by a cancer specialist for treatment.

The family belongs to a religious group that believes in “natural” healing methods. Daniel has testified he believed chemotherapy would kill him and told the judge that if anyone tried to force him to take it, “I’d fight it. I’d punch them and I’d kick them.”

The boy’s father, Anthony Hauser, testified he didn’t know where his wife and son were but had made no attempt to find them. He testified he last saw his son Monday morning, and he saw his wife only briefly that evening when she said she was leaving “for a time.”

Officials distributed the arrest warrant nationwide. Brown County Sheriff Rich Hoffman said Tuesday that investigators were following some leads locally, but declined to elaborate. A crime alert said the Hausers might be with Susan Daya, also known as Susan Hamwi, a California attorney who accompanied them to a medical appointment Monday, or with a man named Billy Joe Best.

Best appeared at a news conference held by the family in early May to say he supported the Hausers. Best, who said he was from Boston, told The Journal of New Ulm then that he had also been diagnosed with Hodgkins lymphoma as a teenager but was cured by natural remedies.

In an interview Wednesday at his family farm in Sleepy Eye, Anthony Hauser said he hadn’t heard from his wife or Daniel since they left. He said he has some ideas where they might have gone, and he’s shared them with authorities.

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Poll: Should teen be forced to have chemo?

He said he thinks his wife just got scared when they got the results of the X-ray on Monday, and thought Brown County authorities would use it to try to get custody of Daniel.

“It’s just my opinion, but I think she figured that because of that X-ray she feared they were going to take him,” he said.

He said he doesn’t oppose chemotherapy “if it’s a necessary thing,” but thinks doctors use it too much.

He wonders why Brown County authorities got involved.

“I don’t know why they started this situation in the first place,” he said. “Why does someone believe they have the right over your child?”

Daniel’s Hodgkin’s lymphoma, diagnosed in January, is considered highly curable with chemotherapy and radiation, but the boy quit chemo after a single treatment.

The judge has said Daniel, who has a learning disability and cannot read, did not understand the risks and benefits of chemotherapy and didn’t believe he was ill.

The Hausers are Roman Catholic and also believe in the “do no harm” philosophy of the Nemenhah Band, a Missouri-based religious group that believes in natural healing methods advocated by some American Indians. Colleen Hauser testified earlier that she had been treating his cancer with herbal supplements, vitamins, ionized water and other natural alternatives.

The founder of Nemenhah, Philip Cloudpiler Landis, said it was a bad idea for Colleen Hauser to flee with her son. “You don’t solve anything by disregarding the order of the judge,” Landis said.

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The family’s doctor, James Joyce, testified by telephone that he examined Daniel on Monday, and that an X-ray showed his tumor had grown to the size it was when he was first diagnosed.

“He had basically gotten back all the trouble he had in January,” the doctor said.

Joyce testified that he offered to make appointments for Daniel with oncologists, but the Hausers declined, then left in a rush with Daya, the California lawyer. “Under Susan Daya’s urging, they indicated they had other places to go,” Joyce said.

Daya did not immediately respond to a call Tuesday from The Associated Press.

Minnesota statutes require parents to provide necessary medical care for a child, Rodenberg wrote. The statutes say alternative and complementary health care methods aren’t enough. END ARTICLE

This deeply saddens and disturbs me. I pray that this boys mother makes the right decision in the best interest of her son.
Being a person with Hodgkin's who believes wholly in the benefits of alternatives, I recognize the difficulty of having to accept traditional care.
However, certain situations do require the use of traditional care and in my opinion, the refusal or inability to rovide proven life saving treatment to a child in your care is neglect.
This is certainly not a situation where there will be a winner or loser. We can only hope and pray that this young man receives the care he needs.
To give a word to ease minds, not knowing the specific type of Hodgkin's he suffers with, it is likely a small delay in chemotherapy will not allow the disease to progress to a point that is untreatable. When the family returns, he will likely still have a significant chance of survival.

Lucid Dreams

My dreams, vivid dreams, took me far away last night.
The giggling, the laughter, the sounds of the happy nurses all helped too.
I was peaceful, rested, riding in the passenger seat of my husband’s car through the country. That’s one of my new favorite places to be, just a passenger, in a comfortable car, going somewhere, but enjoying the trip.
That seems to be the story of my life.
In the car, we passed into a covered bridge, and I could see the shadows of the leaves in the dark. I could hear the planks underneath us as we drove. I felt safe and comfortable.
Then I woke up and decided to write the dream, the feeling, the experience, down so people know at our sickest, we still dream, beautiful comfortable dreams, and our mind’s continue to guide us in understanding the world in our own way, even though we, as patients, may have all ready started to progress between this reality and our new state of being in the next.

5 am Wake-up Call

It’s 6 am. I’ve now been dragged, unhappily, back into hospital time.
I was woken up at 5 am for lab draws. I was woken up at 5 am to be stuck with a needle and then I tried to go back to bed.
At least I slept nicely. The ativan and ambien I requested to assist in this must have helped.
Then, after I’d gone back into my slumber, who knows how much time had gone by, but it couldn’t have been very much, the poker was back, for more blood, waking me up when I should be resting.
I’m guessing this second stabbing occurred about 5:30 am since it is 6 am on the dot now, and quite a bit has taken place since my initial waking.
The second stabbing I tried to sleep through, literally. I stuck out my arm from under the sheets and didn’t open my eyes, hoping, that after attempt #2 I could really go back to sleep.
No such luck.
I think I must now be labeled “awake” to the nurses, since mine decided to trek right in with questions about pain.
I’m barely able to talk. I’m barely able to open my eyes. I certainly have not had my coffee, and I won’t be having any of that, because I am NPO (no food allowed).
She immediately starts asking questions about my pain.
I don’t know. I just woke up. I haven’t moved at all. There is no way of know exactly how much pain I am in from my bed without testing the limits a little.
“Oh, so you’re not in pain.” She says.
No, certainly not what I said at all.
“Can I have my oxycontin?”
“I’ll go check.”
My oxycontin is my baseline narcotic painkiller. I take this twice a day to maintain a tolerable pain level. Thanks to the advent of these medications, I am able to live a relatively productive life. Without them, I’d probably be curled in a ball crying somewhere and completely unable to move.
I take narcotics so I can have a semblance of the quality of life I once enjoyed.
However, I watch them carefully.
“We can’t give you the Oxycontin now, you receive your oxycontin at 8am and 8pm. We can give you some morphine for your pain.” The nurse comes in and explains.
At least she’s getting me something, but me, with my crazy, meticulous, anal schedule of narcotic taking, I do not like having to be under the thumbs of rules and guidelines by hospitals, even though I know exactly what they’re for.
I take my oxycontin first, upon getting out of bed, with the hopes that the baseline long lasting release will prevent me from needing to take the morphine.
This is not a thought process the hospital’s share. I understand.
Hospitals need to undergo a huge cultural change along with health care reform.
I see the cultural change happening in individuals everywhere, and hopefully, this will turn into a movement of patient centered care.
As most of us have seen all over the news healthcare is big business. It is big industry. Until now the health care stakeholders were running under the assumption that the consumers, the sick, had to buy into their plan and whatever their plan allowed, at their costs.
Those times are changing and hopefully bringing along this idea of patient centered care whereby tests, medications, surgeries, etc. are done for no other reason than they are in the best interest of the patient.
Five am blood draws on cancer patients with unknown, excruciating abdominal problems would be the first to go in my book.
Blood is drawn at 5am on patients so it will be available when the doctors round at 8 or nine am.
The blood draws are catered to the needs of healthy professionals who want to look at the results when it is most convenient for them.
The timing does not take into consideration that sleep is sometimes the only true pain relief a patient gets (It has been for me) and awakening them thwarts whatever healing process was taking place during this period and stops it in its tracts, violently.
This is an action that is embedded in hospital’s culture all over the country, so much in fact, that it has never been questioned whether it is helpful or harmful for the patient.
I say use common sense on this one. It’s time for a change. It’s time for a lot of changes.

Tuesday, May 19, 2009

From The Hospital Bed

I caught some talk on Larry King Live tonight while I was struggling to move, tubed to my bed, trying to organize all the endless wires that are helping me get through whatever problem I am having with my stomach.
It still hasn’t been determined what exactly my problem is, but it is significant enough where they have taken away my food.
It is serious if the food is getting messed with.
I am feeling better, but barely. I’m going to be needing some rest and quiet time.
This gave me the time to relax and watch Larry King where they were talking about the hot topic of the week: Farrah Fawcette.
This is my current favorite gossip fodder. I can’t get enough. They’re talking about it on The Today Show, on The View, and now on Larry King Live, and all are aprouching the subject from different viewpoints.
I can only imagine this was the idea Farrah had dreamed of when deciding to make her case public.
It’s why I write.
Her actions in the midst of her disease have opened pathways of communication. She has invited people to comment publicly on her very private battle with the knowledge that in doing so treatment options and struggles with cancer would become more transparent.
What she has done is facilitate communication in an area of disease that needs the most effective communication modalities possible.
Larry King’s version of Farrah’s story was my favorite though. He facilitated a conversation among many oncology specialists throughout the United States and Germany. He did so in a manner that allowed each to state their piece, but eventually, I could see the writing on the wall.
A minor territory battled ensued, much like the ones seen everyday between the ER and the ICU or Dana Farber and Dartmouth Medical, except, this time, it was the United States versus Germany over Farrah Fawcette.
Ms. Angel managed to out a major barrier to expediting cures by contracting a nasty cancer and then choosing, with all her assets and options, to seek care internationally, essentially destroying our nationalistic belief that America’s health care system is superior.
Well, it is exactly thoughts like this that are stopping progress and allowing people to continue to die of cancers.
When I was looking at different treatment facilities a year ago, Memorial Sloan and Kettering had offered several clinical trial drugs that may work in a case as specific and resistant as mine.
I was told these chemotherapies had been used for 50+ years in Germany but were only now making it here, stateside, due to the obvious beaurocratic issues of the last half century.
Well, I thought, if MMSC, the alpha #1 cancer center in the United States, was recommending 50 year old German therapies, then what exactly could current therapy in Germany offer?
I found Dr. Ursula Jacob through a friend that evening. Dr. Ursula Jacob is featured prominently in Farrah’s documentary as her primary doctor.
I’m happy I’ve been able to see the woman I’ve been communicating with for the past year, and she does possess the joi de vivre (I’m going to have to learn to say that in German) I love in a doctor.
I am also happy that I followed my instincts and remained in contact with Dr. Jacob despite the serious misgivings that many, many, many, many people, both professional and lay people, have stated.
I’m sure that now her name is out in the world she has patients trying to hop on board left and right.
I’m all ready on board! Yay me!
In doing this, as stated on Larry King, It is certainly a way to bring hope, but that is not to say I have lost hope in American treatment.
I simply feel I have exhausted the best of American treatment and would like to exercise my right to seek the best treatment available elsewhere, in Germany.
This doesn’t have to get territorial but it usually does. Doctors don’t like to have other doctors “step on their toes” or put “too many cooks in the kitchen.”
However, this presents a great opportunity to view what cancer treatment is like throughout the world, and possibly, hopefully, determine the best worldwide practices to expedite cures for cancer.

Monday, May 18, 2009

I've been hit!

I've been hit! I felt something nasty coming on. When I was happily going about my business yesterday I wondered just how long this period of relative health could go on? It was a bad, bad thought, a thought that planted the seed of doubt. The answer came pretty quickly. Just four hours later the stomach pains started. What a cruel joke. I really thought it was something I ate. I had strayed away from my diet for the day and indulged in craziness like McDonalds, mayo, and seafood chowder. I thought all that fat had been too much for my liver to detoxify, but I was too sick to flush it out. I was busy curling up in a ball in the fetal position and convering myself head to toe with blankets to stop the chills. It's a sick, sick joke how fast I go from health to illness. I decided to sleep it off with the assistance of some ativan that may help the nausea but that didn't stop my body from jolting me out of the bed in the middle of the night. I had hoped evacuating everything in my stomach would make me feel better. It didn't. All it did was potentiate the chills so I realized I was , in fact, sick. When I spiked a temp I knew it was over. I am know heading to boston for a check up. Cross those fingers.

Sunday, May 17, 2009

Hillary Quotables

I was quoted and didn't even know. I think Jon was online doing some googling last night, knowing that I wake up, and after getting my much needed coffee, head straight for the computer where I can work in silence until the little man gets up.
Uh-oh, door open and slam, here he comes. I can hear the quick-step, scuffling pitter-pater of his feet running around the house looking for me.
It's nice to know people are listening and have listened. The copy below is from The Valley News.
And I thought they missed me! How exciting.
A couple days ago I received a call from the wife of a man who is looking towards an autologous transplant at Dartmouth Medical.
It's liberating for me to have the ability to use my disease to help others. It gives my suffering purpose that I can bring some comfort to others who are going through what I have. I hope I can do this in an honest, candid manner that focuses on what can be done to improve the situation.
Marleigh wrote about me on her and her husbands collaborative blog in a posting entitled The Glass Is Half FULL. How appropriate.
I think we'll be speaking again next week after an important appointment of theirs.

Published 3/13/09
Budget's Effects Are Deep And Wide
N.H. Legislators Get An Earful in Valley
By John P. Gregg
Valley News Staff Writer
Claremont -- Cancer patients, overwhelmed parents, recovering addicts and local officials last night all pleaded with House budget writers to restore funding for a variety of programs in New Hampshire's proposed two-year budget.

More than 350 people attended a regional hearing of the House Finance and Ways and Means committees at River Valley Community College, with many sharing wrenching stories of misfortune and voicing opposition to millions of dollars in cuts proposed by Democratic Gov. John Lynch.

Charlestown resident Hillary St.Pierre said she was diagnosed with Hodgkin's lymphoma three years ago and said she has had to ask for help with medical costs after exhausting her $2 million insurance maximum.

St.Pierre, who has had to give up her job as a critical care nurse at Valley Regional Hospital, was wearing a surgical mask and gloves to prevent infection after a second stem-cell transplant; she asked lawmakers to raise the cigarette tax, fund the state's cancer plan and save a catastrophic illness insurance fund Lynch has targeted.

“I suffer, not only from cancer, but from fighting for care,” said St.Pierre, 26. “Everybody should know exactly what even the most economically prepared, financially stable and educated patients suffer.”

West Lebanon resident Jessica Ellicott showed the panel a photograph of her 11-year old son, Sam, who is autistic, and said funding for family support services would “help us tremendously.

“I'm begging you to please not cut (off) the waitlist for services for family supports,” she said.

And Meriden resident Sara Burbee told the panel of the difficulties her family has faced because of a traumatic brain injury her husband, John, suffered when hit by another car.

Her 10-year-old daughter, Alyson, broke down sobbing in her mother's arms as the girl started to read lawmakers a poem she had written about dreaming of her father before the accident, and how she now feels there is a “stranger in the house.”

Several people who have gone through substance-treatment programs also spoke against potential cuts.

“I'm proof that treatment works … these programs will not survive a budget cut,” said Alisa Bento, now a counselor at Phoenix House, a recovery center in Dublin, N.H.

Thanks to federal stimulus funding, Lynch has recently backed away from a proposal to suspend $60 million in local aid from the rooms and meals tax, but local officials last night said other budget cuts were taking a major toll.

Hanover Town Manager Julia Griffin said her town stands to lose at least $126,000 from cuts in revenue sharing and the requirement that the town pick up more pension costs for municipal workers, which together would increase the town tax rate by almost 2 percent to make up the difference.

She also noted that Hanover is seeing increased needs for fuel assistance, its welfare caseload and social service agencies, even as other local revenue, such as that for building permits and car registrations, are dropping steeply.

Griffin also said the Hanover Selectboard had voted this week on a blunt message: “Any reduction in state revenues will be built directly into the town tax rate … and will be accompanied by a letter linking the increase directly to the state of New Hampshire.”

Another major Upper Valley community said the budget cuts would have a different -- even more dramatic -- effect.

Pointing to firefighters and police in the room, Claremont Mayor Deborah Cutts said the city would have to resort to furloughs or layoffs if Claremont loses as much as $1.4 million in state-related funding.

“We can't pass these cuts on to the citizens of our community,“ she said. “They can't handle it anymore.”

And Lebanon Mayor Karen Liot Hill pleaded for more school building aid.

“We definitely need the support to invest in our school buildings. We have a crisis with our junior high, and funding from the state will be crucial,” she said.

More than 50 people testified last night at a hearing expected to last some four hours, including several who spoke out against New Hampshire's heavy reliance on the property tax.

“I believe the time has come for New Hampshire to adopt an income tax” for educational purposes, said Meriden resident Rod Wendt. “We are far too reliant on property taxes in this state. It is not a fair tax.”

Claremont City Manager Guy Santagate said a legislative proposal to allow an exemption for part of the value of owner-occupied homes would ease the property tax burden in his city, while raising taxes on vacation homes in wealthier communities.

“The property tax is the worst tax on the face of the earth, but if you are going to stay with it, change how it is implemented,” he said.

State Rep. Sharon Nordgren, a Hanover Democrat who sits on the House Finance Committee, said the panel is holding regional hearings in Salem, the North Country and Claremont, as well as another series of hearings in Concord on Tuesday. Nordgren's committee will take up the budget after the hearings conclude.

Nordgren said the situation with the waitlist for services for families whose disabled or challenged children are turning 18 is “very sad,” but that some money for health and human service programs might be restored thanks to savings found elsewhere in state government.

Asked about the pointed message from the Hanover Selectboard about the “downshift” of the fiscal burden onto local towns and property taxpayers, Nordgren, a former Hanover Selectboard chairwoman, said, “It's true, but I don't know any solution right now with the tax structure that we have.”

While much of the testimony focused on health care, human services and municipal government, several artists also spoke against a cut to the state arts council.

“The arts are not frivolous,“ said Bente Torjusen, executive director of AVA Gallery and Art Center in Lebanon. “We need to recognize the arts help stimulate the economy while nurturing the soul.”

John Gregg can be reached at or (603) 727-3213.

Friday, May 15, 2009

Reaction to Farrah

I’m watching the Farrah Fawcette special.
I’ve been looking forward to it al week.
I’ve told everybody I’ve spoken to about it.
I’m talking everybody, including cashiers at the grocers, secretaries at the cancer centers, and random possible new friends.
Yes, everybody, please watch Farrah Fawcette’s documentary, because she is using the same Dr. in Germany I will.

Dr. Ursula Jacob is now officially famous stateside.
Thanks to Farrah’s documentary I now know to whom I have been speaking over the past year. I now know somewhat where I am going.
I feel like my research into options has been validated. If Dr. Jacob and The Klink Im Alpenpark is good enough for Charlie’s Angel, it is good enough for me.
From what I’m seeing, Germany’s toys are so much better than ours. Their technology is amazing. Too bad people will be playing with them using me.
This is the nurse in me speaking, the scientist. The lab, diagnostic tests, scans, the sick those are my toys. It is a playground of innovation.
I was shocked when Dr. Jacob very clearly stated to Farrah that liver metastasis is a very ominous sign and that when this occurs, the prognosis is generally not good.
This is my denial speaking. Obviously, clearly, I know tumors in the liver are very, very bad.
I also know that in the past two weeks, while I have been cooking and cautiously eating, enjoying my steroids and relaxing, meticulously managing my supplements and medications, my liver enzymes have been cut in half.
My liver enzymes were barely elevated above normal on Thursday. My ALT was in the 120s two weeks ago. Thursday it was 60. Normal is 56.
I rubbed my liver. I’ve been saying I’ve been “giving my liver some love” for the past couple weeks.
I have been using a chiropractor who also practices acupressure to facilitate drainage, specifically stimulating areas along the spine, which is innervated by nerves associated with the liver.
Did everybody follow that?
The use of acupressure utilizes the trifecta of organ, nerves, and spinal collaboration.
When my liver is manipulated, often, especially during extremely sensitive times, my actually liver is never even touched.
Not even close.
There is an area at the base of my skull that use massaged that coordinates with the nerves that then stimulate the liver, naturally.
It’s at the base of the skull, perfect to find on all the badlies.
It’s also directly beside the area of innervations for the respiratory system.
My lungs and my liver are two organ system that have been severely affected by my cancer and treatment.
We do rarely directly manipulate the lymphatic system. That could open Pandora’s box.
As if on cue, knowing it was on my mind, my liver gurgled as Farrah and Dr. Jacob spoke.
Because I become so thin, my chiropractor, Dr. Klema, can actually feel my liver and then the opening of the biliary ducts.
After years of practice, he can feel the organs responding to his touch. Specifically, he can feel my organs.
Watching the show I want to tell Farrah, I get it.
I understand why she wants the misery documented. I understand why she wants everybody to see how she suffers while so many specialized, technical procedures are enacted in the hope of survival.
I’m now concerned with exactly how long I will be residing in Europe.
Watching the documentary, I think I should just make myself at home.
I am officially going to start learning German.
I am googling the Klinik as we speak.
The area does look beautiful. It is in view of the Alps. The adjacent living arrangements are created in a spa-like atmosphere specifically for disabled travelers. The building looks like it is a modernized version belonging in “The Sound of Music.”
I just happen to love that movie.
I also love the styles. Bring old Hollywood back.
The area is an hour south of Munich, which will hopefully make travel easier.
Of course, there is the thought in the back of my head, exactly how much will this cost?
I am trying not to get upset. I am experiencing a deep sadness. I want to cry. I keep watching the television and then flipping back to my laptop diverting myself from tears.
I don’t even know why I want to cry.
I am to the point of quiet, stalwart acceptance.
My situation is what it is. I told myself at the beginning that I would do everything within possibility to survive.
I want Xander to know I did absolutely everything possible to stay with him.
I’m not going to worry about the timeline, the travel, and the arrangements now.
I’m fortunate to have such a large support group. There is always someone who knows someone.
With businesses practicing internationally now I am lucky to have loved ones who have traveled to the region before and have contacts in Munich, or at least in the country.
I’ll be well taken care of. My family will be well taken care of.
I am buying a leiderhosen too.
It is hard to watch someone else experience the same feelings, the same roller coaster of emotions associated with treatments and remissions and hope and devastation.
It is a dramatic experience, unparallel to any other in life, to know the joy of survival only to feel the tragedy of possible death.
I don’t think there is any other comparable experience in life that runs such a gamet of emotions than thinking, feeling that you have survived and overcome an obstacle like no other only to realize that your own body has defied you once again, and maybe, you are not as strong as you believed, that maybe, you will die despite all your very best efforts.
I have never been good with disappointment. I have known failure. It is absolute devastation to think the largest obstacle I may fail to overcome could be my only, my last.
The thought is making me nauseas, but it’s not making me cry.
I want to say Go Farrah, for showing your balding head. Real Women Are Bald.
Unlike Farrah, however, I am going to enjoy the trip to Germany.
I’m going to experience it like a tourist. I’m going to love the Alps and enjoy the scenary.
My cancer has been a journey. It has given me the adventure of my life. It has provided an adrenaline rush like no other.