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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Saturday, January 31, 2009

Perfectly Imperfect

You are right people, I am too hard on myself.
You know what else? I think I’m too hard one everybody else.
Do you want to know WHY? Do you want to know the whole culmination of events that made me the Hillary I am today?
Well, maybe I’ll give you the highlights.
I am a perfectionist.
But I don’t want to be. I want to be easy going and laid back and chill like my dad. I certainly can be like that. I think there is a time and place for everything. The trick is knowing when and where.
He was always a big idol of mine, but my mom had some major influences too.
She-bear momma (because she has my back in a big way) did always want the best for me, but she also did always want me to be the best (no problem with that).
Life was a fierce competition and I always wanted to live up to her standards. She was the perfect working mother. She balanced a significant career with being betty crocker for my friends and all while keeping our home immaculate.
I think that’s the way it’s supposed to be. It’s all I know, but I can’t keep up. I’ve tried and tried and tried, and believe it or not, I have eased up on myself.
When I first became sick, I would have an anxiety attack over dirty floors. The pressure to keep my perfect life in the presence of my illness and my body’s newfound restrictions would send me straight to bed with a migraine.
I wanted to keep up. I wanted to keep my life. I wanted the roles as nurse, wife, caregiver, bread winner, mom, daughter, sister, housekeeper, chef, and overall rock of the family, but I just couldn’t do it.
I couldn’t fight for the lifestyle I wanted and fight my disease.
However, my abilities declined before the people around me caught up.
There was a lot of hostility in this transition time. Many others just didn’t comprehend my new limitations and how they occurred so rapidly.
My friends still wanted to meet at the bar at 8pm.
I wanted to switch to lunches.
They wanted to head to the clubs.
I didn’t understand why we couldn’t party at my house, it was cheaper, we could have just people we liked, I made the drinks just as well, and we could pick our own music.
They just went to the clubs and the bars without me.
Other young people who have experienced this understand, but they are the only ones. I find great solace in knowing that this transition period is common. It scares me how long it lasts.
My family expected the same mom and wife, but I couldn’t look at food without throwing up. I couldn’t walk 15 feet. I did want to clean, but I would fall asleep on the way to the bathroom.
What was seen that I was not cleaning and “being lazy all day.”
Ouch. That hurts. Let’s just pour salt in the wound and add insult to injury.
Problems with communicated my ever changing needs has always been difficult. I blessed with the ability to roll with the punches and readapt to my ever changing situation so I can make the best of it.
Most people are not so flexible. It takes time to cope, but how long does it take. How long should I be patient before a write someone off as never being able to be understanding and empathetic.
I battle this.
I expect a lot of myself, and a lot out of others, since they have the physical ability to be and do what I was. I resent the fact that I’m in many ways physically incapable of contributing like I would.
I also resent the fact that I feel like my life has been severely shortened. I do not want to do anything other than what makes me happy. I don’t want to be around people that contribute to my sadness, anger, fear, etc.
If you are not part of the solution, you are part of the problem.
A lot of this perfectionism is anger and mourning in disguise. I do need to be easier on myself, but among those closest to me, I need them to be easier on me.
I need to catch a break in a big way. I feel like I’ve been struggling, fighting, and holding on by my nails for dear life for too long now.
I do want someone to take the reigns and join me as a partner and want to take part in my care. I want them to enjoy it with me to the best of my ability. I don’t want them to expect me to keep composed when I don’t want to or to yell at me when I throwing a kicking temper tantrum that I may break something or make me feel guilty for projecting a little anger on my doctor.
I want my actions to be accepted without judgment but guidance.
The people I wanted for this role do not want to come along for the ride and play by my rules.
That’s fine. I’m just comprehending how the expectations of me affect how I interact with other people. I want to stop being critical. But you know what, I’m not really critical, I could care less what you do, I just want my opinion heard for information purposes.
Take or leave my ideas. I don’t care how you live your life. I’m now judge. The thought that I appear hyper-critical and judgmental hurts.
I’ve actually consciously tried to protect myself from these traits. I’ve been the victim of harsh words and critical judgments to many times and the pressure is overwhelming.
I don’t want to be perfect, don’t know, never have, but I’ve never seen it done any other way. I’m just being me, and you can be you, and this way we can all live harmoniously accepting that we are all perfectly imperfect.
I just need to transform myself. In all honesty, these days, I only do what I enjoy. The things I do that I don’t enjoy are done under pressure from outside sources.
Now, I just want to be me and enjoy everything I have and leave the rest. I don't want to be bothered with the cunundrums and pettiness of life. A lot of things have become inconsequential to me, but treating others equally and with respect is still something I try very hard to do. To be judged as damaging and less than a compassionate person hurts. To be judged at all still hurts.
I hope you all understand this. Every action has an equal or opposite reaction, even psychologically. I need any pressure to be eased, because I have just about reached my breaking point.
Please accept my perfectly imperfect self.

Friday, January 30, 2009

Tale of yesterday

"We do the best we can with the information we have at the time, and that is the best we can do." -Dr. A D-F

Yesterday was another adventure. I was very excited. I woke up drank my coffee, ate my cheerios, showered, got dressed, got Xander good to go and even put on make-up for once all with ample time to make it to the hospital, or so I thought.
Yesterday with everybody hiding in their house due to the snow lured me into a false sense of security about how long it would take to drive into Dana Farber for a 9 am massage.
Weds. It took about 20 minutes. Yesterday, it took an hour and a half!
How do you think I was taking THAT riding in the car?

I was okay for the first hour, then when I realized I was going to be late for my full body massage, the one thing I’d been looking forward to, probably the only thing that was going to get me to relax at all, all hell broke loose!
Almost everybody on the road was an ass, and how dare they get in my way (Honestly, they did need some driving lessons). A jeep pulled out in front of us only to go 30 in a 50. Just imagine the sign language I sent to that woman. Then an elderly gentleman driving another sick patient to DF had to get in front of us and stay pause at the green light and take each turn veeerrrryyyy cautiously.
I thought I might need to hop out and commandeer the car for my sanity. If not, at the very least, the man needed driving lessons.
I finally jumped out of the car and charged the hospital from ½ a block away.
By the time I ran to the cashiers to pay for my services and some employee was in the front of the line, just taking her time, replacing her lost T pass, etc.,etc.,etc., I burst out crying.
There goes that make-up job I was so excited about.
Everything was just too much. I needed to relax and everything was in my way. Mother f*****.
The woman behind the counter caught me crying, and the employee got out of my way, which was very nice and understanding of them. They didn’t ask what the tears were about, but since I look all of 18 years old and I’m crying in a cancer center, I’m pretty cure they could wager a good guess.
I got dressed all pretty just to keep myself looking good, feeling good, and kept composed too.
Didn’t work.
However, the massage did.
The masseuse extended the hour so even though I didn’t get in until 9:20, she worked on me until 10:15. Bless her soul.
There was a point when I was told my doctor needed to okay the treatment, at which point my mind started muttering, “If Alyea knows I have an appointment with him at 10:45 and if he knows what is good for him he will okay this.”
He doesn’t want me coming into his office a big frustrated, emotional mess anymore than I want to put a smack down on his ass because I’m pissed at the entire world.
The massage did the trick, and then I ran into one of the cutest transplant patients ever in the waiting room, which I AGAIN didn’t really get to talk to since I was being shuffled from blood draw to vital signs to exam room.
I did get her number though, so now I can call. I really want to talk to her.
Alyea came in on time, which should have shifted my mood. We discussed getting me a psychiatrist to assist in prescribing my psychotropic drugs. Those medications are nasty little buggers that interact with everything.
Also, I am feeling a little crazy. Who wouldn’t be in my situation. I’m integrating back into society and I’m checking my back like I’m at war. People step up to touch me and I step back, making it clear my personally space begins about 5 ft away.
I eyeball plants with their dirt and fertilizer like a slow moving enemy just waiting to send fungus or bacterial cells into my body.
The world is a scary place. I now understand why cancer survivors sometimes become agoraphobic (scared of everything and refuse to leave their homes).
I’m sure I just lamented Doc’s idea when he stated I “really needed a partner in my care,” and I burst out crying.
I do need a partner in my care. I do need someone who is as invested in my health as I am and is willing to learn all I have to and assist me when I’m overwhelmed, sick and unable.
The unfortunate truth about that is the person who I thought was going to be my partner in this does not want the role.
So I started crying.
Then I stopped, quickly, of course, because big girls don’t cry.
Alyea did manage to make me feel reassured somehow. He stated Pat, the transplant nurse, had heard of the German doctor I was considering seeing and that Pat knew of several other patients who had taken that route before.
No word on what the outcomes were of those patients though. I didn’t ask. I didn’t want to know. No reason to further dampen the bleak outlook for the day.
By the end of our appointment I did want to jump up and give him a big hug for appearing like he genuinely cared, but my mother had told me I was too hard on him so I held back.
Had she not made me feel guilty about spewing some of my man hating mood ate him, I may have jumped up and strong armed him into a hug, because I certainly needed one. Maybe he did too.
Anyway, I left for Heather’s to get my afternoon nap before X, mom, and I went out on the town to explore Natick.
X has taken a liking to the bigs. He’s a really great traveler. I’m staying for the rest of the day and making my residency here official. It’s time. I’ve been thinking about joining the realms since May.
I’m now a Red Sox fan, I may as well be a Massachusetts resident too. I do live her half the time. I have a bank account and mail sent to the condo. I’m starting to feel all warm and cozy here. I’ll wait and see how this progresses.
Please remember I’m being candid with you, I am not failing and my feelings yesterday do not represent how I’m going to feel forever. I hope I’m just experiencing a “normal” reaction to all the stressors in my life. Once these resolve, okay at least for the most part, hopefully I’ll be back to my cheerful self.
For now, I’ve said it once, I’ll say it again. I need your love and support. All the great comments are getting me through. It’s reminding me that despite all that is difficult in my life, maybe I’m still important and can still make a difference. Show some love.

Thursday, January 29, 2009

Yesterday in Thoughts

I'm awake. It's 4:30 am. I've heard early a classic sign of depression.

Me? Depressed? Now, why would I have any reason to feel that way?

Well, let me give you a couple reasons: my health. Yes, my health status does depress me no matter how many moves I make to empower myself. I am very excited about the new avenues I'm taking, but I do have to give myself time to cope with reality.

I don't even want to say what I think reality is I'm so upset about this.

This is culminating in anehedonia. There's a word for your vobaulary list. I don't really experience enjoyment in anything right now.

I though I would. I am happier at my sister's place. I'm being treated like a queen. Their showing me a great amount of love.

But I'm not quite myself yet.

Then Heather and I went shopping last night and I didn't even have fun there. I'm not interested in buying anything really. I have so many clothes, even if they are on clearance. And all thos clearance signs, well they just remind me of the general malaise felt around the US due to the economic crisis.

If I can't find joy shopping with Heather, I'm in a little trouble.

It's going to take more than a morning of Maury to get me out of this funk.
On top of this, I'm get grouchy. Yes, straight up, in your face, bronxitis, grouchy.
I'm done with the stares when I walk around in my mask and gloves.

In my mind I think, "Yeah, I look weird in this mask, but you look weird too and that's just because your face sucks." Hehehe.

There are periods that I am happy, but they seem to be just that, short periods of intermittant happiness inbetween my overall gloom.

But let's talk about those because they're more fun and motivating.

I was excited to see the secretaries at DF yesterday, both the Queen and Lamour. They amuse me to the point of happiness even in a dreary place like the waiting room at a cancer clinic.

I hung out at the Blume Resouce Center and met a first day, wide eyed, mond opened volunteer, Kaitlyn, which I very much enjoyed talked to about her perspectives and my perspectives and putting them all together.

I enjoyed my dermatologist and the doctor assisting him, who referred to Dr. Saavedra as "The man." As in, "I'm a lucky girl, I'm getting to see THE MAN."
I was a lucky girl too, because those moles of mine look absolutely fine. Doesn't appear to be any problems there.

My report in 2003 suggesting I had some atypical, amorphic cells could have just been traumatized cells that were mistaken for diseased ones.

I did laugh in the appointment when Dr. S came in wearing somebody else's white jacket, and my she-bear mother (she has my back in a big way) told him to go get his ID, because for all she knew he was a janitor that caught me walking through the waiting room and decided he wanted to have the luxury of having the full body view. HA! That's my mom in a nutshell.

I also met with two great nutritionists. Their love for their job just beamed off their faces thereby making me very excited about food too.

They also told me that I didn't have to cut back on red meat, which I informed them could be steak tips for breakfast, lunch and dinner. They said I just had to be aware that I wasn't cutting out any fruits or beggies that contain those oh-so-necessary phytonutrients (I call them fight-o-cancer foods).

Very exciting news. They also stated the little amount of coffee I drink each morning is completely acceptable (coffee is full of antioxidants) so long as I hydrate myself throughout he day.

My liquid goal is 51 oz. daily and my diet should consist of 75% vegetables.

This appears comepletely doable.

By accepting what I LOVE TO EAT and working with it, they've educated a very compliant young patient.

Usually nutritionists come in and tell me HORRIBLE news, such as you are now on the liquid diet and can only drink chicken broth and eat jell-o for the next week. They NEVER come in and say "hey, because of all you've suffered, we're upgrading you to the steak, lobster, and shrimp scampi diet with wine."

I think I would have had better past experiences with nutritionists if this was the case.

I'm actually excited that there is one area of my care that I can have complete control over.
We're going to meet again and discuss my supplements next time.

After all the information I got from them, I was spent. The did recommend some websites, I leave you with two to start: and

I was excited for the receptionists in the Vakim Center (which I continually pronounce Vakeem for some reason). This place is a little jewel within the Farber that I hadn't yet found. The do a spectrum of holistic treatments for patients including massages, which I've signed up to receive at 9 am this morning.

If that doesn't make me feel better, I don't know what a girl is to do.

Maybe part of the reason I feel so off is this crazy, out of control hair I've sprung.

I think if I didn't just grow it, I'd be pulled it out. Yes, it is incredible thick and beautiful, but what I am supposed to do with it?

I'm going to put it to poll. The question is "About the fro- should it gro or should it go? Should I cut it yes or no. Your call people. Either way, it's amusing me.

I think, I hope, today I'll be feeling better. I'm happy to be with my family that loves me. I happy X is such a good little traveler and as long as he has his DS, goldfish, cheerios, juice boxes, and a Ball to play "monkey in the middle" with, he's good.

That's my little man.

Allen also is learned microsoft Access, which I'm very excited about, so we can mutually work on this non-profit start-up idea I've been loving for the past couple weeks. I'll tell you more about it once all the proper avenues are taken, but it's a good one. I really do need a job.

Send good thoughts my way.

Wednesday, January 28, 2009

The day in pictures Jan28

Me and a transplant buddy. We welcome you to Dana Farber

It was a LONG day today, full of adventures,
just the driving was an experience in itself, but like true New Englanders we weathered the storm in my quest for health.
Both appointments, one with the dermatologist and another with a nutritionist, both went great. I'm feeling confident and motivated at the very least.
I'll keep you posted and give you more details later when I am not so exhausted from all the excitement.
For now, check out the pics.

Mom, X and I stayed at my second home, my new digs, my sister's place in Natick.

It took a minor act of God to get us into the city, but the weather did generally behave despite reports of 16-20" of snow (WAY OFF, PEOPLE. Reality was more like 3-6")

Here is my very favorite place to relax at The Farber, but I'm not saying where it is. . .

Of course, the mom, my rock and personal support person, geared up and ready for a day of healing.

Big Day

It's a big day today, a really big day. I actually have to go and start my day, oh, about now. I'm headed to Dana Farber for a series of appointments. One with a dermatologist to peek at some "suspicious moles." They were biopsied back in 2003 and showed some "atypical, amorphic cells." Then, I completely forgot about them. Ooops. Any nasty cells in my system could be contributing to reoccurences.
Also, I'm seeing a nutritionist to perfect my anti-cancer diet. I think I've got a good foundation and some skills, but just to err on the side of caution. Knowledge is power.
Xander has opted to go to Chuck-E-cheese with Heather rather than to my appointments (who would have guessed that one?)
I think all around, despite some major freak-outs yesterday about the possibility of snow, it's going to be a good day.
All those rumors about Boston receiving 18" of snow, but I'm only seeing 2" or 3" outside.
Keep us in your thoughts and prayers today.

Tuesday, January 27, 2009

Tax Poem

Tax his land, Tax his bed,
Tax the table At which he's fed.
Tax his tractor, Tax his mule,
Teach him taxes Are the rule.
Tax his work, Tax his pay,
He works for peanuts Anyway!
Tax his cow, Tax his goat,
Tax his pants, Tax his coat.
Tax his ties, Tax his shirt,
Tax his work, Tax his dirt.
Tax his tobacco, Tax his drink,
Tax him if he Tries to think.
Tax his cigars, Tax his beers,
If he cries Tax his tears.
Tax his car, Tax his gas,
Find other ways To tax his a$$.
Tax all he has Then let him know
That you won't be done Till he has no dough.

When he screams and hollers, Then tax him more,
Tax him till He's good and sore.
Then tax his coffin, Tax his grave,
Tax the sod in Which he's laid.
Put these words upon his tomb,
Taxes drove me to my doom...
' When he's gone, Do not relax,

It's time to apply The inheritance tax.

Accounts Receivable, Tax Building Permit, Tax CDL license, Tax Cigarette, Tax Corporate Income, Tax Dog License, Tax Excise, Taxes Federal Income, Tax Federal Unemployment, Tax (FUTA) Fishing License, Tax Food License, Tax Fuel Permit, Tax Gasoline Tax (42 cents per gallon), Gross Receipts Tax, Hunting License Tax, Inheritance Tax Inventory, Tax IRS Interest, Charges IRS Penalties (tax on tax), Liquor Tax, Luxury Taxes, Marriage License Tax, Medicare Tax, Personal Property Tax, Privilege Tax, Property Tax, Real Estate Tax, Service Charge Tax, Social Security Tax, Road Usage Tax, Sales Tax, Recreational Vehicle Tax, School Tax, State Income Tax, State Unemployment Tax (SUTA), Telephone Federal Excise Tax, Telephone Federal Universal Service Fee, Tax Telephone Federal, State & LocalSurcharge Taxes, Telephone Minimum Usage Surcharge Tax, Telephone Recurring and Non-recurring Charge tax, Telephone State and Local Tax Telephone, Usage Charge Tax, Use Tax, Utility Taxes, Vehicle License Registration Tax, Vehicle Sales Tax, Watercraft Registration Tax, Well Permit Tax, Workers Compensation Tax

Taxes, taxes, taxes


Not one of these taxes existed 100 years ago, and our nation was the most prosperous in the world.We had absolutely no national debt, had the largest middle class in the world, and Mom stayed home to raise the kids.
What happened?
And I still have to 'press 1' for English...

My Name is Bunny Rabbit

Sublimating rage in childhood play therapy

Children need to be taught the words and the socially appropriate reactions and responses to their anger within the instigating environment. If the skills are taught within a controlled environment and never applied in every day real life situations, the teaching will inevitably be lost.
Xander has a lot of anger. I dare say he has a lot of rage.
Traditional therapies for children his age do not appear to be helping him cope. He is still having difficulties with his expressive language. He does not have the words to communicate his feelings, but he is improving every day. He has improved so much.
I placed him with a child therapist who used play therapy to instigate a response from Xander. Play therapy is gentle and leading. It is quiet, soft play through books, puzzles, dolls, etc.
Xander is a boy, a knock down, drag out, kicking, screaming fighting boy. Playing house with dolls to roll play situations which may occur is just not his style.
I did this with him when he was three with animals. He would act out how he wanted daddy to care for me. How he wanted daddy to be my healer hero. He would act out getting me the foods I craved to help me be better.
Now he’s five and it’s a whole different ball game. The situation has changed. He’s been through play therapy with several different providers.
It is just too soft and gentle for a child of mine. Drawing and art therapy ultimately ends with him destroying whatever he made.
Hey, if that is what makes him feel better.
But it doesn’t. It doesn’t accomplish anything. Even at five he seems to be acutely aware of this. Destroying things and play therapy is a band aid for his rage.
It was time I got creative.
I called an old collegue who founded TRAIL (Therapeutic Recreation and Interventional Learning). He is an occupational therapist who works with large gross motor skills.
I was an angry kid. I hadn’t stopped and looked at myself and what worked for me in sublimating and expelling my rage. I didn’t make the connection that what worked for me would probably work for my child.
He is, eerily, like his mother in the ultra-competitive, mega tough way.
I sublimated my rage through sports. Where else could I kick and push and get rewarded for it? Sports were the best option for me.
It kept me out of fights in high school, if only because I knew if I acted up during the season there’d be consequences.
I wasn’t a big fighter, but Heather was, and obviously, I had to have my girls back. Any fight I was in Heather instigated and I had to help finish.
There was one time when the fight was between Heather and I. My family laughs really hard about it now. I think the secretary and former assistant principal do too.
Heather had been getting on my nerves. My mother had called the school the week before and warned them I was going to kick her ass and apologized in advance if it was on “their turf.”
Dimick, the assistant principal and our soccer coach, was also a twin. He understood that sometimes a big knock down drag out fight had to happen.
Low and behold, it was on their turf. I had the car keys and Heather wanted to leave to see her boy thing. I didn’t like the current boy thing so I said no. I told her to go to her damn class, to which she responded by pouring coffee down my back since she was standing behind where I was sitting.
My reaction to this was to turn around and stand up with all my force landing a right upper cut to her jaw.
That ended the fight for the moment, but school had just started. At lunch time she (or I in her version) misbehaved again. This time we were both prepared to brawl, and we did, right in front of the window to the office.
Both Dimick and Patty (the secretary) came running, Patty jumped on Heather to restrain her. Unfortunately, Patty, for one day in her career, had decided to wear a dress. It just had to be the day the St.Pierre twins had at it. Patty was wrestling Heather on the floor, legs in the air, and dress hiking up.
I stepped back and watched. I knew Dimick was stronger than me. He is 6’5” or so. He was my soccer coach. I knew when I was in a fight I couldn’t win.
So Dimick and I watched the struggle until he stepped in and made us go to the office.
He called my mom and told us we both were being sent home.
My mom replied, “Oh no, you are not. You need to keep one. Make your pick.”
He kept Heather and stuck her in In School Suspension. He sent me home, where I immediately went for a five mile run to get out my rage.
He knew I would do this. I was pissed and needed to get all the extra rage out of my system. How was I going to do that? Exercise until exhaustion.
I’m going to teach my son the same thing, with some help of course.
We’ve all ready started. We’ve cleared out a hallway. All the pretty, breakable decorations are gone. They’ve been replaced with a construction paper score board and a marker taped to the wall.
At one end is a trampoline so we can do “ups,” where I throw the basketball high and he has to defend the wall. He also have some serious games of monkey in the middle. He’s been working steadfastly at how he carries the ball, because if he does flash it in my face I will take it. He’s learning how to protect that ball quickly.
He’s also getting an outlet for his anger. Usually, he starts screaming and stomping about some injustice, then after a while, we break down in giggles over our silly tactics.
The other day, since he couldn’t get by me, he decided to bounce the ball off my face to improve his odds. Every move after that he kept eyeing my face. When I would calal him on his thoughts he would keel over laughing.
I have a very special bruise between my eyes from our shenanigans.
That’s okay, since he almost put his head through the wall while struggling for possession with me.
Now, he’s starting to see every person as a potential ball player, including my NP Melissa, who does have 2 boys but they are not quite 5 yet. He was just giving her a preview of how the big boys roll.
I always did intend to make Xander a baller. He is my child. It’s unavoidable. I just never guessed he would be so drawn to it so dramatically so early.
I’m happy I’ve finally found an outlet for Xander’s rage. I’ll keep you apprised of how this goes. If ANYBODY has ANYOTHER ideas, please post them or email me.

Let the cancer games begin

Let the cancer games begin!
All my struggles before, that was just practice. Now, it’s on in a big way.
I’m excited to be taking more control of my healthcare. I’ve been sitting on the sidelines too long.
It’s time I got in the game.
I mailed the majority of my medical records to Dr. Jacob in Germany over the weekend.
I’m heading to Boston tonight with mom and Xander to stay at Heather’s house. YAY! It’s the first mini-vacation I’ve had in a long, long time.
I’m in need of a new locale. Staying in this house has been driving me crazy.
And guess what?! I’m eating kiwi. Yes, I can now have fruit. I’m easing myself into my new diet, an anti-cancer diet. Low carb/no sugar, much like the Medittarean diet, and very similar to how I all ready eat.
The animals are back in the house too. Both Nika (or sneakers, because she can sneak that nose in anywhere) and Josie, our adult cat that is permanently kitten-sized, are home.
Everything is now right in the world for Xander.
And for all you out there saying how I REALLY need a job, I’m working on it. I have a business idea, and hopefully the support.
Just remember to watch out now.
I see good things in my future, whether a healthy me is included in that I don’t know.


I’m depressed.
By definition, depression is anger turned inward on oneself due to the thought process that it is not safe to outwardly express ones anger.
I am angry.
I’m angry I live in my perfect little house with my perfect little family, romping around in this exteriorly perfect little body of mine and my perfect group of friends all put together so perfectly, and I may not going to be able to enjoy it.
Worst of all, for all the outward perfection, my insides are just one big cantankerous mess.
I’m angry I have done everything within my realm of knowledge to get better and I still have cancer.
I’m angry I may die of cancer when so many others out there are trying to convince doctors all over that they are “disabled” for the free checks.
I all ready went through my “why me” phase, but damn, why not somebody else?
Why not one of the drug seekers from the emergency department that has three kids by three different daddies and one tooth by the age of twenty-one? They would certainly enjoy the prescriptions I have. They spend their lives trying to get them. They spend their days consumed by their habit. Why not add a little refractory cancer to the mix and give me my life back?
But it doesn’t work like that. It doesn’t work like that because life isn’t fair.
Good people that contribute to society get cancer. Young people with families get cancer. Intellectual people who busted their ass for an education get cancer instead of a career. I’ve cancered my career indefinitely.
I’m now pursuing other goals, like surviving until I’m thirty.
Why am I depressed and not angry?
I’ll tell you why.
If I really let all the anger out that I’ve pent up over the years all hell would break loose. I’m afraid I’d incite a riot.
I need time to clear my head. I need time to channel my rage.
I’m busy trying to intellectualize my disease and sublimate my rage. These are my two favorite coping mechanisms. I’m going to understand everything I can about Hodgkin’s and related blood disorders and all the possible theoretical theories to treat them.
That helps calm me down a bit.
Then I’m going to take my knowledge and apply it towards myself in some self experimentation. This is me sublimating. I’m doing something socially acceptable with my rage instead of doing something crazy and unacceptable.
I’m experimenting with myself. Some people call their body a temple. I think my body is a temple, but right now I treat mine more like an amusement park.
I think this is going to be FUN. It’s the most exciting thing I’ve got going for me now.
I’m also planning trips. I’ve got big things coming up, big things.
I’m going to my sister’s house next week with Xander and mom. I have a couple appointments at DF and I figured I should just make a mini vacation of it.
I am experiencing a cabin fever like you wouldn’t believe.
If Alyea would loosen the reigns I would be far, far away on a beach right now.
Actually, to be honest, I’m thinking about tagging along on Allen’s business trip to Paris for free lodging so I can see my German Lymphoma specialist at the beginning of March.
The beauty of this trip is that I get to go to Paris, with free lodging, and write off what I spend (within reason) as a health expense. YAY.
But that’s still not making me completely happy.
X and I may run off to FL to my grandparents house and hang out on the beach, or of course, at Disney (which I’m sure I can’t avoid with X in tow).
My girls from NY are coming to visit for broom hockey weekend the weekend after next. Against restrictions, I will have Colette, Laurette, Daisy, Maggie, and Noami staying with me, along with Daisy’s stepdaughter Havanna and Maggie’s kids Aryanna & Dominic. All these people alongside me, J, X and Lex.
It’s going to be a mad house. I’ll be sure to post video so I can formally introduce them.
I’m sure many of you have never met a person like me before. Now stop and imagine a house full of women like me, many of which are louder and more crude.
That will be fun.
But as of right now, this moment, nothing is making me feel better. I just want to sleep the blahs away. The news that stem cell research is beginning in America that I received yesterday is not making me feel better.
The restrictions stayed too long and I’m all ready on the wrong side of the prognosis spectrum.
All the information I have, all the names of genius researches from Columbia, MSKCK, and AD Anderson doesn’t make me feel better.
I don’t want to trek around the country and the world wasting precious time I could be spending with my loved ones, asking for treatments that will make me feel worse, that will further diminish my vital capacity, all for what? To extend my life how long?
Yes, sir. Again I’m being realistic, not pessimistic. I’m probably going to die.
You know what makes me more depressed, I’m not worried about death. Death is not what I’m scared of. I’ve lived my life how I want. I am not afraid of dying.
I am sad about losing what I have in life. I am sad for my family, friends, loved ones and supporters, especially for my son, who I know will remember me during the happiest, biggest moments of his life and wish I was there.
I’m sorry and sad for him that I may not be.
I’m depressed and it’s not really about me. If it was just me, isolated, I would be fine. What makes me sad is how everyone else will have to go on. I don’t want to leave an emptiness in anybody’s life.
All the love, support I receive, that I’m so fortunate to receive, reminds me of the hole I will leave, even if I am comfortable with the life I have lived to the fullest, without regrets.
It hurts right now. I just hope it won’t hurt for too long.
***This was written several days ago, I'm doing much better today.****

Monday, January 26, 2009

Abused Patient Syndrome?

There is a phenomenon among abused children diagnosed with “Abused Child Syndrome.” These kids, through out their lives into adulthood, seem to be more acutely aware of others feelings and possible reaction to these feelings through facial reading and body language.
As far as I knew, this response was limited to children who had suffered abuse at a young age, and by necessity were forced to anticipate the feelings of their abusers to remain safe.
However, on the day of my PET scan I was nervous. Often, when I’m nervous, I get jittery and I talk.
Standing in line to register for my PET I began speaking to the woman in front of me. She told me she was there for her “Yearly Scary” or mammogram check-up after breast cancer treatment.
I laughed and told her I’d never heard it referred to as that, but I was there for a PET scan, my diagnostic test to see if my transplant had been successful.
We both admitted we were nervous and that we turn into neurotic, crazed individuals around the time that our tests come up.
Then she admitted to me that after her test, in the doctor’s office, she searches the Doctor’s face, watches his body language, his positioning, and the context of the words he chooses to use to try to anticipate her results.
I thought I was the only one. One test day, I want to know my results. I want to know them immediately. I want transparency between the doctor and I. I understand that the truth may not be stated as clearly as I would like so I search for other indicators.
Psychologically, this makes sense. A person’s brain and perceptions are very susceptible and vulnerable during traumatic periods. Consequently, I don’t believe a patients brain or psyche can differentiate between a doctor that is ordering harmful, painful therapy in search of a cure and a person that is just outright hurting us.
Essentially, the message gets muddled in the mind, the provider becomes the abuser (due to their power to order harsh treatments) and the patient the victim.
The “Fight or Flight” response is very rudimentary. It has been in existence sine the dawn of man. It is not a sophisticated mechanism. However, this is the mechanism often employed in conjunction with fear in the doctor’s office.
The body is conditioning the patient to view the doctor, who has power over their treatment, as a predator or abuser.
Everytime a test comes back positive, it’s like a slap in the face to the patient. Every new chemotherapy is another beating. Every new surgery another stab in the heart most of these are ordered by one guiding person, the doctor in charge.
In the presence of a vulnerable mind, the complex systems that allow people to differentiate between someone who is trying to help by hurting and someone who is just hurting is indistinguishable. Thereby a rudimentary, autopilot safety response turns on, and the patient begins to exhibit signs much like “abused child syndrome.”
I think this is a really really cool psychological theory speaking as a provider. As a patient that experiences this, it’s not so cool.
This pathological psychology further burdens the patient and widens the gap of power between the doctor and the patient. This will seriously inhibit communication as the patient begins to take on the role of the abused, and the provider, unknowingly, continues in their role of abuser.
The stage is set for the patient to feel submissive within the clinic setting. The patient is told where to sit, while the provider maintains a position of power in front of the desk in a chair that is clearly theirs. The patient must accommodate the providers schedule and show up at the time they designate.
If this time is not convenient or something comes up, the patient must wait “patiently” to be seen when the doctor is able.
This sends a clear power statement to the all ready vulnerable ill person who is so desperately seeking stability.
The message often received is the doctor is in control. He/She is in control of the time and place I see them, they are in control of how I feel (by prescribing medications or not), they are essential in control of my life (specifically with specialists who care for people with life threatening diseases).
It should not come as a surprise that in this environment patient compliance is an issue. The dynamics in the doctor-patient relationship are set up to instigate rebellion. When one person has all the power, and the other feels helpless, it is human nature to find a way to retain some control. This is often manifested in self destructive, noncompliant patient behaviors. The patient is not rebelling against themselves and the disease entirely, they are rebelling against an establishment that they feels abuses and objectifies them in many ways.
To resolve this problem the environment and dynamics of the patient-provider relationship must be altered to include the use and empowerment of the patients.
Providers could begin to ask psychosocial questions in addition to the routinely asked physical questions that only serve to objectify a patient and make them feel like a prop, lab rat, or dummy.
Jokes could be allowed to ease tension and be instigated by the provider.
I experience this reaction myself. It makes psychological sense. A person’s brain and perceptions are very susceptible during periods of trauma.
It seems to me that adult cancer patients can get a response very similar to Abused child syndrome which is manifested by our attempt to predict the upcoming news, prognosis, or treatment path prior to any spoken word.
I do this myself in an attempt to anticipate and prepare myself for bad news, just like a child would prepare for a slap or beating.
My senses become more acute. I am hypersensitive, not really emotionally, but to all the sensory messages I am receiving.
I watch the Doctor carefully as he walks in. If it is slowly, with a side glance, formal “Hello,” then straight to his chair. I’m screwed. He has to give me bad news and he’s depressed about it as seen in his slower than normal entrance. His inability to address me face-to-face in a business manner means the same thing. He does not want to look at me, which could possibly make him feel bad for me or attached. There is no room in these moments for cushy feelings. It’s the worst part of the job. Formalities undermine any sense of endearment, the doc is all business.
However, if he has a little hop to his step, if he comes busting into the room like a child who just won a big game, and gives a big jovial hello, life is good for both of us. He’s celebrating inside and trying to hide it, but he knows he’s THE MAN.
Eitherway, I want to know what will happen before they tell me. I want some sense of preparation before I feel the hit to my stomach.
This isn’t just me. I did some informal research, where I always do, in the lobby and waiting in line. Most of us who have undergone serious therapy do this. I’ll tentatively say 65% minimum.
We are traumatized and we, for some unknown psychological reason, are responding to our doctors as our abusers.
It makes sense. You can’t blame your body for abusing you, that would be counterproductive to healing. The only consistent external force seen in our suffering is our doctor.
A doctor “controls” you. They decide your fate such as whether you are okay to resume your normal life or damned to more treatment. Their weapons of torture are treatment: surgeries, chemotherapies, radiation, etc.
No wonder many say doctors have a “God Complex” the psychological structure of treatment, of putting your life in somebody else’s hands, demands the inhuman mentality.
I do think this “Abused patient syndrome” is a very real possibility. After so much torment being ordered by one sole provider through messaging bad news, ordering painful tests, and chemotherapy regimens your psyche begins to respond to that person as a threat, as someone you need to protect yourself against.
Providers have all the potential to harm you in the same manner an abuser would. I’ve often thought of my doctors as a little bit sadistic to withstand viewing suffering so often.
Then again, I’ve also wondered if I’m a little bit of a masochist for taking it over and over again. I do have evidence that I’m a little bit of a masochist and that I enjoy suffering and pain: I’m now a Red Sox fan.
The body, and therefore the psyche, cannot tell the difference between suffering pain for a purpose, such as a cure by the providers, or pain as a result of abuse. It is all the same feeling. It is all the same pain despite the best intentions.
This is experienced by patients who have undergone multiple treatments, and this phenomenon seems to be an invoked response to the pain and pressure of being a seriously ill patient. Unfortunately, this appears to be manifesting as a victim vs. abuser mentality in patients. The ramifications of this mindset could possibly thrawt the healing process. I think it is important for both providers and patients to be aware of the possibility of this reaction and take steps to prevent this dynamic from forming.
FYI- I wrote this prior to receiving my PET scan results. I asked many people waiting in line and in the lobby if they experienced the same feelings and reactions I did when waiting for important test results. Overwhelmingly, the response was “yes.”
Also, my prediction as to how my doctor would behave in the presence of good or bad news was absolutely correct. He did walk slowly, knock softly, had difficulty making eye contact, and introduced himself formally.

Sunday, January 25, 2009

Social Savior Faire

The way I’m made is not a mistake. It’s all for a purpose. It’s all part of the master plan, cancer included.
At least this is what I think.

I hope I can find a way to put al the pieces together and make an impact. I want to contribute something to society. I don't want my disease and my sufferering to be in vain. I want everybody to learn as much as they possibly can from my experiences, so maybe in the future they will be prepared. Maybe, in the future, their fear will be less.

I don't think the culmination of my talents is an accident. I don't think Hodgkin's attacked me in a pointless fit of rage.

God is the puppetmaster and he's pulling my strings. I'm just going with the flow and ENJOYING it the most I can.

Yes, wherever I have to be, I'll find a way to enjoy it. It's all part of my joyful social savior faire tactic.

Let me give you an example of another person who tries to make the best of bad situations.
I have a Haitian friend. That’s just about all you’re going to get about them. Let’s call who it is Keisha, to make this story easier.
Keisha is social, gregarious, with a giant, trustworthy smile, and sparkling child-like eyes.
She is the type of person whom people enjoy. She can talk with just about anybody and the conversation is generally enjoyed.
Keisha wanted to go to Haiti to see her family. No problem, except, she wanted to go immediately, and she had no passport.
Going to what is categorized as a “fourth world” country from the US shouldn’t be a problem for anybody.
The problem is getting back in.
She went anyway.
Later, when I spoke to our mutual friend, that friend said she “lost” her passport in Haiti.
What?! Don’t play me. Who LOSES their passport in Haiti?
No one. You guard that, consciously. It’s your lifeline to civilization.
“She sold it. I know she sold it down there. I wonder how much she got.” I thought.
Our friend gave up the information easily. She knew I’d caught on.
She said our girl had left the US, knowingly, without a passport, and talked her way back into the country when she wanted to come back.
Moral issues, security issues, whatever other issue you may have with this aside, those social skills must be damn good.
Mama possesses the type of knowledge that can be used across borders, in all countries. It’s a knowledge that allows her to navigate through life knowing she will be able to receive what she wants. It’s the knowledge of how people work, and how they’ll respond to their particular actions.
Figure this out, and the world is yours. I’m still trying, so if you know the secret, feel free to fill me in.

I hope I'm getting it, piece by piece. I think every word of wisdom and love you all send me helps understand the world better. I hope I help you understand my world too.

Saturday, January 24, 2009

$COST$ to fight insurance

I have many wonderful aunts and a great family who has been supportive of me through my entire struggle. I’m very lucky to come from where I do. I don’t think my life would be as joyful as it is without them.
Today, I’m going to highlight one, though so many others need to be given special credit at some point too. I’m going to talk about Aunt B, the aunt that gets the special luxury of fighting my medical bills. She works as a liaison between BC/BS, medicare, and all the facilities where I have ever been treated. Here is a sample: Dana Farber, Brigham & Womens, Dartmouth Hitchcock, Valley Regional, Memorial Sloan and Kettering. This list could go on and on and on.
She has taken on the role of communicating with all these treatment centers to ensure I pay NO MORE than I absolutely have to.
As you can imagine, this is no small feat.
We recently discovered that two of the previously named hospitals have not even been submitting their billing queries to either of my insurances, Highmark BC/BS or Medicare. The hospitals decided to cut out the hassle of submitting to the insurance, which likely wouldn’t pay what it is contractually obligated to, and send the full bill straight to me.
Imagine my shock when I start opening bills for $250, $1200, or $1400 when I KNOW I’ve met my maximum out of pocket deductable.
I usually meet the maximum out of pocket deductable (which is $4000 for the family) by the end of January. There is no way this was not met in Sept or October of 2008.
But the bills keep rolling in.
With this discovery, I began to wonder exactly how much work it takes my Aunt B to arrange appropriate payment of my medical bills.
When I asked her, she estimated she spent 3-4 hours a week making phone calls. She said she generally does this early in the week, on Monday, this way she can receive call backs between Thurs. & Friday.
The 3-4 hours does not include any of the time she spends after Monday actually speaking to people.
So I thought, maybe I should do some math and figure out how much it would cost these hospitals to fight on behalf of me if I didn’t have superwoman Aunt B at my command.
I’m estimating Aunt B gets paid about $32 per hour, or whatever a top pay LPN or relatively new RN would be paid.
At $32/per hour, for 3 hours, every week of the year (that’s 52), she would cost an astounding $4992.00 yearly.
But that’s the low end of the estimation, because she also said it is three to four hours generally. How much would four hours cost? Four hours x $32/hr= $128 weekly x 52 weeks = $6656.
WHOA! That is a huge cost to hospitals to fight on behalf of patients for insurance to pay for services patients are contractually allowed.
Furthermore, could you imagine ME spending 3-4 hours a week (not including call backs) fighting with my insurance company for paybacks.
It just wouldn’t happen.
I can’t fight CANCER and the INSURANCE company at the same time. I just don’t have that much energy, and I think the stress would cause the tic, toc of my all ready shortened lifespan to tick even faster.
With all this, no wonder people are dropping like flies and health care is unaffordable.
Hospitals do have to employ many people like Aunt be to fight insurance companies for what they rightfully owe.
If the going rate is $28 an hour for this job and the average week is 40 hours, then hospitals are putting $1120 out the door each week to fight insurance. That’s $58,240.00 yearly!!! This number does not include benefits either.
That number is also for ONE PERSON to fight with insurance companies. Let’s guesstimate that Dartmouth Hitchcock employs 6 of these personnel, with ranging salaries, but we’ll stick with the $58,240 yearly salary.
$58,240 x 6 people = $349,440.00, which is the ultimate cost to a hospital to fight with insurance companies.
Where is the non-profit going to make up for this hole? Well, costs have got to go up, and the problem just gets worse and worse, the hole just gets dug deeper and deeper.
Ouch. I have to go. I hear my wallet crying and my bank account screaming for its life.
If I hadn't just regrown my hair, I think I'd be pulling it out right about now.

Friday, January 23, 2009

Sugar Coating

I’ve been sugar coating again.
I wanted to give everybody the opportunity to be in denial for a while.
I needed time to organize a contingency plan. I’ve finally got one. It’s not completely organized, bu I’m calling it plan Y.
I’ve been sugar coating the results of my PET scan.
I now many of you have recognized the change in my tone.
I don’t feel I am in any way, shape, or form in remission.
Here is the whole truth. I have a Gastro-hepatic node (a node on my liver and intestinal tract) that is hypermetabolic (bright) that does not show on CT.
I also have a Para-aortic node with increased uptake (near the aorta, or where the soloplex is tha glows on the scan).
DF says it’s impossible to say either way weather these tumors will remain active.
My transplant is still relatively new, and I need to give immune system time to see how it may respond. Any graft vs. host will have an impact on how my immune system responds.
This is why I’m in a gray area.
However, the implications of having a disease reoccurrence during the transplantation process are serious.
I can see my odds plummeting.
My odds were 30% prior to the transplant, now I’m guessing my prognosis is in the toilet, headed for the drain.
I haven’t been able to write properly with this on my mind, but I did need time to confirm what I suspected was a scientific truth.
I have a bad, bad prognosis.
My sleeping has been disturbed. I’m tearful, but I’m not in denial. I was given the option of hiding the truth from myself, but that’s just not how I operate. I’m a stare problems in the face kind of girl, and if all else fails, fight like hell.
As far as coping mechanisms go, I like to intellectualize situations. I gain control be learning everything about my disease and every possible treatment out there. I have a whole lot of options stored in my brain. I’ve been communicating with my providers to form a plan.
I do have a plan. I’m calling it “Plan Y.”

As of last Friday, I started to reinstitute a German homeopathic regimen that shrunk a tumor previously, but it also made me feel well and energetic.
I’m consulting a German Lymphatic specialist to possibly receive treatment through her. Several of the trial drugs in the US are all ready being used there.
I’m refining my diet. Next week I will go to Boston for a couple days to see a Dermatologist, a nutritionist, and Alyea.
In 2003, I had a couple moles biopsied that showed atypical cells. We are rechecking suspicious moles that still remain since they could possibly be the source of undifferentiated cells that keep taking over my system.
There is a no sugar/ low carbohydrate diet that has become known as the “anticancer diet.” I mostly eat like this all ready, but I’ll refine it with the help of a professional.
For now, I’m trying not to mope around. I don’t like being alone. I went on a rampage on a very close, well loved friend when I was concerned she was mistreating my son. I was really angry because she was supposed to be a temporary surrogate mom while I got better. I’m worried she is going to be a long term surrogate in my absence.
If anybody has any ideas comment or email
Heather reminded me of her “Tahition noni juice” idea and told me she knew I didn’t think this was such a bad idea anymore. She also talked about a mycologist (Mushroom Man) she knew in NC. He said he had “special shrooms” that may help me. But what I remember of mushroom man is that he’s a hippie that suggested I eat peyote and “throw up” my cancer.
I’m not placing all my eggs in this basketcase. Those shrooms will probably just give me a fungal infection.
If you want to know, below is my original reaction, how I really felt, about my test results.

Real PET Response 1

Real PET Response 2

Real PET Response

Health care Merry-go-round

I have wondered about something for a while now. Let me know if you understand this or have the solution.
Most hospitals are Not-for-profit businesses that are reimbursed by medicare/medicaid but also by insurance companies (such as Blue Cross/ Blue Shield, Cigna, etc.).
Insurance companies are FOR PROFIT businesses!
How can a not-for-profit business pay for the profits of big insurance companies?
To me, this sounds like business 101 for health care chaos.
There is a deep discrepancy here that just doesn’t make common sense.
Also, there seems to be some price fixing going on.
Okay, maybe not “price fixing,” maybe this is the wrong word.
Let me give you an analogy about how medicare/medicaid works.
A visiting nurse association goes to a patient’s home administers the necessary care and orders, let’s say they debreed a wound and place a new sterile dressing.
The cost for the materials used and the RN’s time equals $52 (This is just a number).
However, when billing calls for reimbursement, medicare says sorry, according to our standards, we only pay $38. This is the amount we will send you.
There is no option for negotiation just “sorry, this is what we’re paying.”
VNS now has to eat $14. They’re told just to write it off a tax time (so really, the tax payers are all ready paying the discrepancy).
How would this go over if this was a conversation between a contractor and a client? Say the contractor calls a client and says, “I fixed your ceiling. The charge will be $3000 dollars. This was the bid price, and because your special, I’m just charging you at cost and for my labor.”
THEN the client says, “Oh, sorry. I got another bid from another contractor that said they could do it for $2500. So I’m only going to pay you $2500. You can just write the other $500 off as a bad debt loss.”
WHAT?! No dice. Not in the business world. Why would this ever be okay in the health care world.
I’ve got one better. This is an example from A man on medicare went to the clinic to get a flu shot. They charged the man $25. The man then went home and submitted the cost to medicare. When he was reimbursed, he received $27.50.
He made a profit on his flu shot!
When he brought this to medicare’s attention (this is clearly a man with principles), they said that was the going rate national for flu shots so that was what he is being reimbursed.
No wonder health care is a big old mess.
To compensate for insurance companies refusal to pay even the MINIMUM for patient care, health care agencies RAISE THEIR PRICES in hopes they will at least break even.
Then, in response to the health care agencies response, the insurance will raise their reimbursement costs a little bit, but it cuts into their profit margins, so they pass the increase along to their customers in the form of HIGHER PREMIUMS.
Then, eventually, this whole cycle will start all over again and health care costs will just rise and rise and rise due to the internal business struggle, like a health care merry-go-round.
Except, no ones having any fun here.
Oh no. You know my feelings about people profiting off suffering, specifically mine. So here goes the rant.
People’s health should not turn a profit!! No one should profit off suffering.
Americans have a clearly stated constitutional right to life. Our current process and system has made health care unaffordable, and therefore unattainable, for many Americans.
I’m not just talking about the poor here. I’m talking about me, a woman with the means to build a home at twenty, who had a combined income with my spouse of six figures at twenty-three. If a woman like me cannot afford to both simultaneously receive treatment, pay my mortgage and eat, there is a huge, country wide, problem.

Thursday, January 22, 2009

Living in Balance

I have read a great amount of research on what I like to call: keeping the body in balance.
It’s a theory that goes against the reigning consensus and previous immunological wisdom; however, how much do we really know about the immune system and it’s interactions with everything else that enters our bodies and minds?
I don’t think anybody knows much. I’ve certainly never heard or met an “expert” in this arena of psychoneuroimmunology, but if you know one, I’m game to meet them.
The bone marrow, its stem cells, and the immune system are essentially building blocks on which our body functions. It is the foundation of life.
Just look at what happens when the immune system fails (as in HIV/AIDS) or malfunctions and runs amok (as in cancer and tumor formation). What’s a person to do to combat a war that is taking place within themselves?
Commonly, the war is fought with anti-retrovirals (with HIV) or chemotherapy/radiation regimens (as with cancer). These medications are aimed at attacking the disease directly, and only the disease. The medications are not formulated to take into considerations any interactions the pathological process may have on the body.
Is everybody following here? Let me know if I’m not clear.
In short, our current medications are narrow minded. They are tunnel visioned!! They have one goal and one goal only: to attack the disease.
There is nothing involved to strengthen what is normal within the immune system.
The immune system is commonly taught through a war analogy, but what is never included in this teaching is “basic training.”
In all the analogies I’ve heard, cells go straight to war.
The immune system does not receive any basic training or boot camp to assist with the fight that will use big, toxic missiles (like my chemo). The medications are being given to an ill prepared immune system.
It’s like sending troops to war with no training.
You’re essentially praying that the war will end up like the Alamo.
Then, if you happen to have a refractory disease that keeps occurring, more missiles are sent, but the troops get tired. They have no training and now they’re fatigued. They are going to make more and more mistakes. They certainly need to come home and take a break.
What am I saying with this battle analogy? I’m saying I think measures to prep and maintain the healthy aspects of the immune system need to be used in conjunction with traditional therapies for the best outcomes.
I think current regimens throw off the balance and the inner homeostasis and balance of the body and then they are left unfixed.
This is why I’m working on a plan. A plan to Live my Life in Balance. It’s time I incorporated some extra ideas into healing me.
I’ll keep you updated on how I do this.
For now, here is something special for you to check out

Also, my "Owner's Manual to the Brain" tells me that JOY is the second leading indicator of survival in cancer healing. So everybody, try to keep me happy!!!


There is a story unfolding right now. It is a story about positive expectations leading to positive actions. There seems to be a ground-swell of positive expectations and hope from around the world for our life condition to change.
Whether you disagree or agree, we have a new President . The level of hope that is being expressed by millions of people around the world is unique.
What if nothing happens? Even the President -Elect uses caution when talking about how long the changes will take to make.
It may be that HOPE is what we need instead of complacency and fear. Maybe, if we all start thinking optimistically instead of negatively, it will be contagious, and our expectations will be more positive.
Positive expectations can lead to positive action. There is some synchronicity that is interesting right now.....people seem happier….the people who traveled to DC are all happy...they have something they believe in that might spread.
The story of the pilot who guided the Airliner into the Hudson, no one died...that gives us hope: Hope that good things can happen instead of bad things.
Let’s notice what is working, and reinforce this with our fellow co-workers or community. The theme for this time of change and reformation is: Renewal, Continuity and Unity. Just like Martin Luther King….maybe we can have our dreams come true....let’s try to stay open to it!
Thank you Deb W. For sharing this with us all.

Wednesday, January 21, 2009

The Detox Diary

I’m on a mission to detoxify myself and get my body back in fighting form.
However, it would be unwise of me to undo quickly what it took three years to create. It would be like a heroin addict with 10+ years of experience stopping cold turkey.
That sounds like a bad idea and conjures up images of cold sweats and seizures in my mind.
I do think this is an important part of healing. I want to get rid of whatever is in my body that may be contributing to my cancer.
I told my care team at Dana Farber, they acknowledged they could not stop me. They advised me to proceed slowly and cautiously.
I was. I was doing a great job controlling myself. . . . .until today.
Previously, I eased in Quercitin C. (Quercitin-C 2 tabs twice a day after meals (Maintains blood vessel integrity • Decreases sensitivity to allergens • Reduces swelling and pain of arthritis • Promotes circulation • Reduces your risk of certain cancers •Antibacterial properties •Protects the skin from UV damage. See
The plan is to incorporate one new supplement a week from a German naturopathic regimen I have taken previously.
That’s all good, no problem.
Today, I decided to up the ante a little bit. I decided caffeine had to go.
I always wondered what the problem was with caffeine. It seemed like a perfectly good thing to me. I can understand why God gave it to humanity, but so many people have told me that there is something bad about it. I thought maybe all those people were seeing something I didn’t want to.
Then, low and behold, serendipitously, Aunt Pauline dropped off a macrobiotic book. When I flipped it open, WHAM, I see an anti-caffeine warning across the page.
The book says my beloved coffee comes with pesticides! It’s says caffeine makes us anxious. Caffeine alters the Yin/Yang balance in our bodies inevitably leaving us exhausted.
I decided to drop the coffee and substitute tea with anti-oxidants instead.
YAY. Go me for actively participating in health seeking behaviors. Life was fine this morning.
J bought 100% juice spritzers for me, so I can now drink natural, sugar free beverages instead of soda.
So no caffeine for today. Also, to make matters worse, I’ve never had a “spritzer” that didn’t contain alcohol. This is also a very new thing.
It is all in the goal of good health.
Then, I was reading about the Budwig Diet. It talked a lot about flaxseed. So when my chiropractor brought it up today, I thought that was just the stars aligning too!
I signed up and added that goodness to my lunch.
Except, it isn’t goodness in me.
I’m not just talking about the fact that it is staging a detox coup, I’m saying it’s disgusting. It feels gross anyway.
I woke up with my muscles aching, and no amount of stretching has helped me. My head is banging, and I’m beginning to think I am severely addicted to caffeine. No amount of TEA is going to scratch this itch.
To make matters worse, that beneficial flax seed has certainly done something. It just happened to do that something to my bowels. Not so fabulous.
To top it off, I discovered Joanna Budwig, the budwig diet creator, still died of cancer! Isn’t that evidence it didn’t completely work?
Anyway, I’m absorbing teachings at this moment. I’m taking bits and pieces of knowledge spread by so many great minds and making it my own.
I just didn’t anticipate my body would revolt.

Tuesday, January 20, 2009

PET scan

Pet scan part II

One for the books

It’s guilty admission time!
I know you all love it when I expose my dirty little health secrets.
They are so bad, and yet, so good.
Here is one for the books.
A couple weeks back I experienced a terrible migraine. This headache had been slowly creeping up on me and accumulating for months. It had started to affect my quality of living. I couldn’t do activities I enjoy in my daily life since the pain was so severe.
I could not move my eyes to the left. If I did I would suffer excruciating pain. I felt nauseas with these headaches. All the lights had to be shut off. I plunged myself into darkness.
I could only experience silence. Noise would potentiate the pain.
My senses seemed hyper acute, and even the feeling of the clothes on my skin caused the pain in my head to increase.
I just couldn’t get comfortable. Anything that came into contact with me was the enemy.
I started taking pain medication, such as oxycodone, to try and relieve the headache. It only got worse.
I can’t take any imitrex due to its reaction with my lexapro. The combination could give me “serotonin syndrome.” It’s bad. Not worth testing.
I was starting to get nauseas. I dry heaved a couple times. So when the narcotics didn’t work, I took a benzo, Ativan, that is used for anxiety and nausea.
I thought, maybe, I was just anxious and needed to calm down.
No dice. The ativan was not the cure all for my headache. It didn’t even kick my nausea’s ass. What a dud pill.
I couldn’t stand any noise. I couldn’t stand the vocal tones of women. They were too high pitched and listening to them felt like I was hearing nails dragged across a chalk board. I hid in my dark, silent room and refused to talk to anybody.
I refused until I realized I was NOT receiving information properly. The world just wasn’t looking right. Earlier in the day, when I was traveling with my father, I swore we were going south on the highway when we were going north. The lack of interpretation of sensory information had only gotten more difficult. My perception was off. I had taken so many medications to cure my problem I was concerned I may overdose and kill myself.
It was time to call the doctor. But which one?
I called Alyea, and he said I needed to be seen immediately. Call an ambulance! Get to an ER!
I said I wanted to go to the cancer clinic at Dartmouth. They knew me and always treated my emergency situations well. Alyea said just do it.
I called my old Doc at DHMC, Dr. G, and told him my problem. I asked if I could get into the clinic and be taken care of there. I told him to call my cell back if I could get the tests I needed.
I wasn’t really hearing at that point, and I was certainly confused. I wasn’t receiving any incoming information. If I was, it wasn’t making sense. It was overwhelmed with all the sensory information I was getting from the light and the sounds.
Obviously, since clothes hurt, I was not wearing any, and I could barely get myself dressed. Somehow I did.
I found my dad who came to pick me up to bring me to Dartmouth. I told him just to take me to the ER. I didn’t care. I couldn’t think. I needed to someplace safe.
When I finally got through the process and got into a room the nurse immediately made me put on one of those gigantic johnies that fits 350lb men.
However, clothes were uncomfortable in general. With johnies, I usually wrap them around myself since they are so big and create a wrap dress. I didn’t do this.
As a result, I kept getting tied up in the gigantic johnie. I couldn’t move. I’d try to shift to get comfortable only to get laid out by the mounds of fabric.
That johnie had to go. I took it off and covered myself with the sheets.
At this point, the resident comes in.
Now I forget that I am a grown woman. I am not any longer a little girl. I also forget that these residents are basically my age. You know what, I don’t care. They are doctors, they chose this profession, they’ll have to deal with me flashing my body around.
He introduces himself as Paul (changed to protect the innocent) and explains he is a resident and he is there to assess me.
“Fine, buddy” my irritated mean mind says, “let’s get this done so I can get fixed. I really hope he’s not an idiot.”
I have a tendency to think EVERYBODY is an idiot when I’m irritated, and if I’m really bad, I’ll find a way to prove it to everybody.
We were talking. I explained why I could not take many typical migraine medications due to my condition and possible interactions with other medications.
Then he had to assess me. Apparently, he was a little embarrassed by me lounging around topless even though I was covered in my sheet.
He decided to take MORE sheets and cover me to do his assessment. When he lifted his stethoscope to listen to my heart through 3 different blankets, I almost keeled over in laughter.
There was no way he could hear a damn thing through those sheets. He was just embarrassed and protecting my modesty. How cute.
But I couldn’t laugh, that might have made my head explode. He eventually left and my dad piped up, “What was his name? Pablo?”
Uh-oh. Dad hit one of my nerves with his cultural ineptitude.
“His name is PAUL!” I yelled at him. “PAUL, do you hear a B in it?
“He’s from Italy?” my dad asked, innocently.
“NNOOOO, he’s from MEXICO!” I howled, irritated, but amused.
“Say it with me, dad, PAUL! His name is PAUL, not PABLO. There is no B in it!”
Unbeknownst to me, Paul had walked in during my tirade. Due to the pain, I had been protecting myself from sensory information by hiding under the covers and didn’t see him.
“It’s okay. It’s okay. Not a big deal.” Paul said. Dad and I both stopped talking.
“Whatever you say, Papi.” Escaped out of my mouth and I closed my eyes to sleep again.
I did end up getting some sort of pictures taken of my head to confirm I did not have a tumor. I later saw a neurologist to confirm that the structure of my brain is fine.
The ER gave me 50mg of Benadryl to knock me out sufficiently. I was able to sleep until I saw my people at Dana Farber the following day. It gave me time to process and cultivate a plan with my health care team.
I saw Dr. Meehan, along with NP Beth, and fellow, Josh Rifkin, who had taken care of me years previously, to establish a formal relationship with providers at DHMC. This way, I know exactly who to call and where to go if a problem like this occurs again.
Within the week, I saw a neurologist who gave me several natural treatment options and ordered an MRI/MRA.
The MRI/MRA tests were clean. His suggestions for care of my migraine were excellent and have been EFFECTIVE.
I now take feverfew 380 mg twice daily and I take 25 mg Benadryl in the evenings as prophylaxis. HOORAY, it’s been working.
I got past that, only scarred with an interesting story to tell.

Bye Bye Bush

Bye, Bye Bush and the phallic symbol age when Bush, Dick, and Colon (Get the pun?) were in charge.
I’m not knocking Powell, I actually at one point thought HE was going to be the first black president.
But he’s not, Barack snagged that legacy.
The previous administration has been ousted with an astounding 81% disapproval rating!
As for those other 19% I’m guessing some are staunch supporters, but I’m also guessing some don’t even know who Bush is and the others just don’t give a damn.
With all this happening, I think today is going to be a good day.

Monday, January 19, 2009


I keep wondering, if maybe, I should edit myself, or at the very least, reread what I’ve written. I like communicating, but I’m getting tired. I’m getting foggy.

Try not to be shocked by my choice of topics. My family understands. We’ll always love each other. They understand what I’m about and what I’m not. That’s why I can include them.

Some subjects I won’t address. These are subjects that would adversely affect the lives of others and my relationships. I place these under the Not my business category. I have enough business of my own, thank you.

It does not mean these issues have no affect on my life. I just need to show respect. Not everybody has the option of not being here in twenty years. I can say what I do for the greater good, because I’ve faced some vital issues regarding my mortality.

I am going to tell you how my perceptions of blood cancers have been formed. I think it’s important to realize how the past events of your life shape your current thought process and outlook.

My first brush with a blood cancer was when I was in elementary school. My mother’s friend from college died of leukemia. She had two children, both younger than me.
I remember crying, not for the woman, but for her kids, and about the idea that my mother could die the same way. I think I was seven.

I don’t remember my parents mentioning this woman’s illness until she died, and we had her girls staying with us for a while.

I think I was in the fourth grade when another friend’s mother really started to struggle with her leukemia. My father had roomed with their father in college. Our friends are twins, like Heather and I.

I remember going apple picking with their family, and thinking, she doesn’t look so bad. I always forgot she was sick. I’d talk on the phone for hours with the girls. The subject of their mom never really came up.

I’d talk to their older brother sometimes too. He was and still is, ironically, one of my husband’s best friends.

Their mother, Lynn, looked startlingly like me, same facial structure, coloring, same body type.
She underwent three transplants, one that failed after 120 days. One hundred days is supposed to be the magic number. You’re supposed to be on the safe side of your treatment after that period.

She, obviously, wasn’t. She died when I was in the fifth grade leaving four children behind.
I still love her family, and I try not to let my relationship with them be effected by my illness. It is. We don’t have the words for each other. I look at them and want to say something, but all I can do is remember how difficult their childhood was. I remember how hard their parents tried to make their mother’s illness easier, but couldn’t.

I would call up their older brother pretty frequently when I was first diagnosed, or at least suggest my husband should.

My husband assumed, wrongly, in the beginning of my treatment, that I should be able to continue to take care of my family the same way I always had. He insisted Lynn did it. We fought about this for months until I pulled the trump card and reminded him that Lynn had died.

At some point, she stopped cleaning the house, cooking dinner, and taking care of the kids.
I still want to call her girls, who I was such good friends with, and barrage them with questions. What made the situation better? Should I keep X away from me when I’m really sick? Should I tell him I’m going to live or be realistic? What made it better? What are the little things I can do?
I have so many more questions for them. I’m being passive about asking. I’m hoping J or D are still keeping up with me, and will comment or email their answers.

Everytime, I even think about calling them for this information, I burst into tears. Not the slow moving tears you can talk through or hide, the heaving sobs variety from the reminder of how hard someone can fight and fail.

Since this experience, I didn’t have much exposure to these types of diseases.

I had a friend in junior high that died from complications of AIDS. Blood cancers and HIV/AIDs fascinated me by 13.

I would do little science experiments and read advanced medical literature. I loved the theoretical aspects of immunology. I liked research. I think you can tell the nerds early.

I think the parallels of blood cancer and HIV are intriguing. I don’t know if they’ve really been studied, but I’ve recognized a lot of people suffering from lymphoma experienced a relatively severe upper respiratory infection in the months prior to showing symptoms and becoming diagnosed. This upper respiratory infection had no known cause and showed no change in CBC (bloodwork).

When this happened to me, I was laid out from work for a week. I had a CBC done and a chest X-ray. They were both normal.

When these labs were referenced by one of the first doctors I saw in January when the masses started to present themselves, I couldn’t understand why my CBC was normal. To me, a normal CBC, absolutely normal, as in perfect, when I felt so terrible, was wrong.

My instinct, my past experiences, sent me into a panic. I thought I was going to die. I was convinced I was going to die.

I wish past experiences and impressions of diseases were discussed on intake with the health care team. It is a huge clue into the fear the person is experiencing. These experiences are the jumping point for all patient’s assumptions, whether or not they have been educated with numbers and science.

Numbers and science will allow patients to intellectualize and attempt to control their disease. It is beneficial, but with out understanding and encoding the past, no one will understand the nagging thoughts, the cause of tears, the anxiety, or the nightmares these patients are experiencing.

Knowing these factors is as simple as asking, “What experiences have you had with this disease previously?”

My answer would be, “I’ve never met anyone who has ever survived a bone marrow transplant. Everybody I have ever personally known with a blood cancer has died.”
Maybe then they would understand that I was scared to death and no matter how hard I try, I can’t keep these experiences from creeping into my mind. I don’t think any other patient can either.

Saturday, January 17, 2009

Just holler "Hell NO!"

Here is the most recent pet peeve for me to rave about: pharmacies that barely fill your prescription, place it in a bag, don’t tell you, and charge you full price.
Can I hear an “Oh hell NO!”
Yes, this happens. It’s very irritating. You leave the pharmacy happy you received your medication AT ALL, usually after a couple hour wait, only to discover that you’ve been tricked into paying full price up front for a fraction of the prescription.
Not okay.
Usually, if confronted, there is an excuse, such as “Oh, that’s all we have in stock.”
Okay, then WHY did you not tell me? Were you trying to sneak it by me? Are you banking on the idea that I won’t be back to fill the rest and you’ll make out with an entire payment for partially providing care?
That’s fraud. It’s wrong, plain and simple, black and white.
But the problem here goes far beyond money. Defrauding the ill is a new low to make money off the sick.
From a public health perspective, this behavior could cause a crisis of anti-biotic resistant strains of diseases.
Has everyone heard about MRSA scares? MR stands for methicillin resistant. This disease is a huge problem because antibiotics don’t work. It takes weeks of the strongest, broadest spectrum antibiotics to fix, if it’s fixable at all.
How was this made? Through people partially taking their antibiotic prescriptions. Previously, providers thought that patients were at fault for stopping antibiotics when they feel better giving bacteria the opportunity to adapt and become resistant.
Always take your entire prescription of antibiotics.
Now people are cutting back due to funds and taking partial scripts, and to add insult to injury, THE PHARMACY IS PROVIDING PARTIAL SCRIPTS.
NO! Big pharm is not looking at the big picture here.
Let’s use an example, say a 5 year old with an ear infection who receives a prescription for Amoxillin goes to a pharmacy in VT that does not have the entire dose for the child.
First of all, who let’s this happen during winter in New England?
Now the pharmacy, just doesn’t tell the mom, and fills the script. When they get home she realizes she only has two doses!
Who is going to drag a sick kid out at night after trekking around offices and pharmacies when it is -16 degrees outside?
Not me. Not many people. That sounds like a circle of hell to me.
The kid gets partially treated, not because of the doctor or the parent, but because of the pharmacy.
There is no guarantee that when you go back to the pharmacy they’ll have it in stock. They’ll say “You have to what until Monday when a shipment comes in.” or they may ask you to wait 24 hours to get your refill.
Guess what? That kid could miss 4 doses at a very pivotal point in treatment, and the amoxicillin that may have worked, now doesn’t. Then it’s time to move on to a bigger, badder prescription for the child who has about 70 more years of life expectancy to make more resistant strains of bacteria.
This is going to be a progressing public health care problem. You’ve all been warned.