Dr. Hillary Prescribes "Herbal Gleevac"

Aww Stony, I knew you'd hit on something I've been meaning to talk about.

Yes, I've used and prefer my marinol the old fashion way. I am a full on support of marijauna for medical purposes. I, once, belieed that the "legalize marijauna" movement was just a bunch of hippie stoners looking for a way to protect their favorite pass-time.

Having suffered long and hard, I now know for a fact it relieves pain, anorexia, nausea, and vomiting like no other medication possibly can. It also doesn't have side effects like dyskinesia, which are Parkinson-like twitches that can last for life. I can't take most commercial anti-emetics because they cause dyskineasia.
That side effects is scary as hell.

 I'd like to get high. My severe lung issues: lung fibrosis from radiation and bronchiolitis obliterans (GVHD of the lungs from my allo transplant) won't let me.

I've just started walking up stairs again after years of being unable. I get pneumonia upon pneumothorax. Just a few months ago I was going into respiratoy ditress so badly walking five feet to my care I would wet my pants.

So no smoking for me, which means I need to find a way to eat it and enough of it to do its job.

 Its kind of hard to down brownies to treat not eating, vomiting, etc.

So I've been thinking....
I know, a little scary, that maybe I could turn it into a dipping oil for bread.

 The problem with cooking weed is you need something like oil or butter to extract the active ingredient (THC). If you don't do this your just chewing anyother weed.

Then I could dip bread, which I do eat, into it or pour it onto rice, which is also easy to ingest.

And I'll up the ante by adding herbs to the olive oil.

In the book, "The Anti-Cancer" there is a suggestion for the herbal equivalent of gleevac.

 Gleevac is America's most recent promise drug for cancer patients. Its a chemo therapy pill that allows people to live virtually normal lives with cancers such as leukemia. One writer and editor at Elle magazine was diagnosed with leukemia in her late teens and now in her mid-twenties is looking to having children while taking the drug, but these meds all came from ideas in nature so I'll throw these in:
Parsley, celery, mint, thyme, marjoram, oregano, basil, and rosemary.




I don't know exactly what amounts of which herb will work best. I put most my faith in the parsley, which has shown up time and time again in literature, as well as oregano and thyme.
I'll let you know how it works out.
I can whip this up for next time aka Jan. 10 when I get my medi-port placed and resume treatment.

Thank you everyone for commenting and reading. You remind me why I started writing. I'm excited and hoping I'll have the energy and strength to keep writing. I think that should be my artistic focus and my hobby.

 Last year I didn't feel like myself with the steroids. I felt crazed and confused. I feel like last year was spent in a foggy cold sweat that I'm finally emerging from.

I've been thinking a lot about my past therapis and how they relate to my current state.

I have taken SGN-135, the new"It" drug for hodgers that looks like it may give them a chance to have cancer without disease.

I took it at dana farber in the summer of 2008 during Phase I to establish proper patient dosing. Phase I means never been tested on people. I had a Level 4 reaction. That means a tachy arrhythmias, severe dehydration with electrolyte imbalances, cardiac abnormalities. I had to be spoon fed gaucamole by my sister.

Level Five is Death.

I think it was determined I received the dose for a 300Lb man but that's what happens with trials.  Not all trials offer participants a nice easy ride.

It did send me into remission, which we knewit would, because everything sends me into remission.

 I was a total lab rat and allowed it because I knew it would be great for others in the future.

I used to cry remembering my view of "kill one to save a thousand" when I was a healthy practitioner, a wannabe future researcher, but now I'm thankful for the time it has given me and the ability to help others in the future.

 I think I have access to the very best trials with Alyea at Dana Farber if that's the route I want to take.

And I would want that trial to be for a cancer vaccination.

See, I also know exactly what study I would try to finagle myself into. I have contingency plans upon contingency plans. I was on Plan Y (do everything possible to stay alive) two years ago but it's working out.

My priority is being close to my family and having as normal a life possible here.

GVHD Eye trial

Thank you everybody who share their ideas ideas, suggestion, etc.

I am now starting a trial, an unexpected trial, for my left eye.

Unfortunately it's an off-label use drug trial, not a clinical trial that the company pays for and not something insurance will cover.

Imagine the shock when I saw this sign at the pharamcy.

Thanks to you who have donated to my medical costs. You've eased the burden of my new $150 every 3 week medication.

 I'll be using the medication in my left eye only with the right eye as a control.

When Dr. Jon first looked into my left eye a sudden heavy silence fell over the room.

I know this silence. I'm too familiar with it.

It's the "Oh, that is baaaaadddd." Silence.
It's the "i-need-to-get-a-good-look-and-think" silence.

Dr. Josh took his time and I sat fidgeting wondering how bad it was.  When he rolled back to his desk he started immediately talking treatment.

This is what I like: options. I had severe dryness, inflammation and irritation or GVHD of the left eye only. We plugged my upper tear duct to lock in moisture. He wrote a script for azythrmycin eye ointment to use as an eyegel.

You know if it's bad on the cornea research floor at Mass Eye and Ear its bad. He said I may be a candidate for a special eye patch, but Dr.Dana had put the cabosh on contacts years ago due to infection risk.

 I am the perfect candidate for this trial. Dr. Jon verified I had tried everything else possible including: photopheresis, prophylactic doxyclyxline, artificial tears, twice daily hot compresses for 10minM flax seed oil, fish oil, restasis, eye plugs, RX contacts, eye flushing and on and on.

I knew what was coming. Dr.Dana has been after me for this trial forever, waiting for the perfect conditions where not only would I do the study, but I would pay for it. The time came.

Eye pain is the most excruciating followed by lung/rib pain then by abdominal pain. That's my opinion based on my experience.

As a perk, I do get upped to a special, priority patient status with the eye guru himself. I think if I had asked and resisted the trial from fear, I could have finagled his pager number, if not a cell or home phone number for access to the best eye care anytime, as an incentive to get me to sign on, but I did anyway.

After the new plug, the removal of the microfilaments, and two doses of the drops I'm feeling relief, but time will tell the rest.

A Day in the Life: Chronic Cancer Style

I've been writing like I'm invincible, like I have some control over my body and health. 

I think it's time to admit just what it takes to get me, or any person who has battled cancer for years, to get moving, to get out of bed, or out of the house.

 I stopped posting my medlist on the side bar because the contents would take up all the space, But here goes the routine: first morphine extended release, 60mg, hopefully before I even get out of bed.

Let's be real, do you think that really happens with a 7 year old tugging at me saying "It's time to get up?" 

No. 

I grab my bag 'o meds, drink, cell phone, and clothes to bring out to the livingroom where I do finally take my pill. Then I go and get a fresh drink of juice and maybe cereal to control my blood sugar and fight the urge to vomit. 

I take this in before I start in on my everyday morning meds. These include synthroid which replaces my thyroid hormone, prednisone, which I take to replace the function of my adrenal glands and control inflammation, famcyclovir, to help my immune system fight viral infection, zithromax 250MG as part of my bronchiolitis obliterans regimen, and mepron which protects me against PCP pneumonia.

I am a bionic woman, just about every hormone, organ, or bodily function is regulated by a pill, and these are just my everyday, long term maladies.

 Usually by the end of taking my everyday am meds I've started to feel whatever will ail me for the day. 

You didn't think all those pills would cure my ills did you? 

I've probably reached for 30mg of instant release morphine by then for my everyday aches and pains.

 I may be cursing my stomach either wishing my laxative would make my bowels work or because it worked too well. 

I'm probably debating how I should treat my nausea: should I take my ativan and risk falling back asleep for the rest of the day or should I take my marinol or cesamet and just get high? 

It all depends on my goal for the day. 

I really miss the days I could stumble out of bed and great the day fresh eyed and bushy tailed with a shower and coffee.

Who knew I could ingest so much before 7:30am, and these are just my morning meds. 

My lovenox is a subQ shot I save for later to keep from clots (specifically PEs) from forming. I truly believe that getting the PEs diagnosed was an act of divine intervention.

My Lovenox and mepron are what I call "never ever meds," as in I must "never ever" miss them. 

Oops, silly me, I've forgotten about my eye issues, which require me to remove the mucous from my lashes and try to milk the microfilaments from my eyes before I flush them with artificial tears each morning.

How could I have forgotten about that?

 At least I don't have to prep for ten minutes covering my line just to get in the shower. 

Thank goodness my bathroom mirror is only 4 feet away from where I sleep. I can't count how many times I pat myself on the back for being such as genius at the tender age of 20 and building a first floor master suite into our house.

And yes, folks, the above is only a list of my everyday routine.

Chemo weeks and emergencies present with their own obstacles and medications. Those weeks are special.

Christmas Wonderment

My favorite part of Christmas are the looks of pure joy and excitement that crosses a child's (or anyone's) face when that perfect present, the one they've been wishing for FOREVER but never believed they would actually receive, is opened.
It's pure magic in a world that sees too little.
Giving someone that feeling of happiness and wonderment combined is the reason I dive into the Christmas Foray.
I'm so lucky I was able to see and experience that for another year.
X was superkid yesterday.
HE woke up at 7am like we talked about, immediately woke me up, and started tearing at his stocking, but then came the shocker: I had promised he would be opening presents by 8am and he was giving everybody an hour to get themselves together.
Merry Christmas to the adults. My parents and grandparents appreciate that hour and everybody started the day a whole lot happier and awake than we usually do.
And yes, Virginia, X had the childhood glow of Christmas wonderment all day after he opened his Xbox 360 with Kinects, which I have to say, is some damn cool technology.
And I was able to catch it on my cameras!

We had a great family breakfast here before starting a day full of family Christmas tree hopping. We went to Jon's parent's next so X and Zariah (a niece) could open up presents from Meme and Grandpa, but since Carter and Alexis were at another set of Grandparent's house we said we'd come back later to see them open up theirs.
Then we went to my parent's home for our immediate families' Christmas.
Was that ever chaos with three very excited boys: X opening and handing out presents, Pierce tearing open his stuff, and Preston just knowing it was excitement time, climbing on and in boxes.
Then it was family dinner where my brother and Grace finally made it, but we had to run back to Jon's parent's real quick when C and Lex arrived.
There we had another Christmas, mostly for Lex, where we got to see those excited, amazed childhood faces again.
Lexi has had a rough couple of months. She's living with J's parents now, and like any 11 year old, she's had mean, grouchy, angry flashes. This year she refused to write a Christmas list with X and I, but Meme finally got one out of her. She got a pink MP3 player, 4G with a touch screen and a nintendo DSiXL, which plays games but also takes pictures that you can write on and record.
Again, I got to see that face I love so much.
I also love to see how unexpected presents just catapults an okay day into a great one and how that feeling can last at least for the week and hopefully become a good memory that can be reflected upon during difficult times.
That's one of the reason why these traditions are so important. When I felt lost or unloved as a child, I remember I could always think about camping or Christmas or broom hockey, but then since they were traditions, I could also look forward to them too.
It added a sense of comfort that I knew I'd be doing something I loved sometime soon with people I love.
Of course, no day can be perfect, and in my haste of making sure everyone had a present, who did I overlook?
The most important people, of course: my mom and my mom-in-law didn't get hand made jewelry, but certainly should.
And then I was left empty-handed wondering what would be perfect to get all the unsung heros in my life. These are the people who jump to my assistance without being asked,  who set up the generator while I'm at the hospital when the power goes out so I can have oxygen or keep my bills out of my mind and collections by advocating for me tirelessly.
There are quite a few of these people. They're the best people, the ones who do what they do out of the love and kindness in their hearts without ever seeking credit.
Actually, they hide from credit. That's why few of these acts are ever mentioned.
How do you pick a gift for someone whose come to your rescue and saved your life?

I'll let you know when I get the answer. Until then, Happy holidays.

Cheers to today!

I can't take credit for writing the text below. I received it as a forward from a knowledgeable friend. I hope you read and enjoy it anyway:


Too many people put off something that brings them joy just because they haven't thought about it, don't have it on their schedule, didn't know it was coming or are too rigid to depart from their routine. 


I got to thinking one day about all those people on the Titanic who passed up dessert at dinner that fateful night in an effort to cut back. From then on, I've tried to be a little more flexible. 


How many women out there will eat at home because their husband didn't suggest going out to dinner until after something had been thawed? Does the word 'refrigeration' mean nothing to you? 


How often have your kids dropped in to talk and sat in silence while you watched television? 


I cannot count the times I called my sister and said , 'How about going to lunch in a half hour?' She would gas up and stammer, 'I can't. I have clothes on the line. My hair is dirty. I wish I had known yesterday, I had a late breakfast, It looks like rain' And my personal favorite: 'It's Monday.' She died a few years ago. We never did have lunch together. 


Because people cram so much into their lives, we tend to schedule our headaches We live on a sparse diet of promises we make to ourselves when all the conditions are perfect! 


We'll go back and visit the grandparents when we get Steve toilet-trained We'll entertain when we replace the living-room carpet. We'll go on a second honeymoon when we get two more kids out of college. 


Life has a way of accelerating as we get older. The days get shorter, and the list of promises to ourselves gets longer. One morning, we awaken, and all we have to show for our lives is a litany of 'I'm going to,' 'I plan on,' and 'Someday, when things are settled down a bit.' 


When anyone calls my 'seize the moment' friend, she is open to adventure and available for trips. She keeps an open mind on new ideas. Her enthusiasm for life is contagious. You talk with her for five minutes, and you're ready to trade your bad feet for a pair of Roller blades and skip an elevator for a bungee cord. 



My lips have not touched ice cream in 10 years. I love ice cream. It's just that I might as well apply it directly to my stomach with a spatula and eliminate the digestive process. The other day, I stopped the car and bought a triple-decker. If my car had hit an iceberg on the way home, I would have died happy. 



Now...go on and have a nice day. Do something you WANT to...not something on your SHOULD DO list. If you were going to die soon and had only one phone call you could make, who would you call and what would you say? And why are you waiting? 

Have you ever watched kids playing on a merry go round or listened to the rain lapping on the ground? Ever followed a butterfly's erratic flight or gazed at the sun into the fading night? Do you run through each day on the fly? When you ask 'How are you?' Do you hear the reply? 



When the day is done, do you lie in your bed with the next hundred chores running through your head? Ever told your child, 'We'll do it tomorrow.' And in your haste, not see his sorrow? Ever lost touch? Let a good friendship die? Just call to say 'Hi'? 

When you worry and hurry through your day, it is like an unopened gift....Thrown away.... Life is not a race. Take it slower. Hear the music before the song is over. 

MERRY CHRISTMAS TO ONE AND ALL!

Christmas started coming a day early: first, with me finding the perfect outfit THAT FIT right in my own closet, a pair of size 10 Ann Taylor Jeans and a red button shirt I bought mid-summer, both nearly new, then Jon came home from his annual day-before-Christmas-shopping with a Sony cyber shot camera FOR ME to replace the previous early Christmas present, an even better Nikon Cool pix, that dropped and broke the second time we used it.

YAY, I have a camera of my own for Xmas.

Then, as if life could get any better, he FIXED the cool pix camera! HE also fixed X's handheld PSP that was no longer reading games. 

He had a genius day.

And everybody, if you have children, a rowdy or adventurous life that includes outings, activities, and travel the Nikon Cool pix is probably not for you.

It is not real life user friendly. It can't be thrown in a purse and make it out on the other end okay.

If you are a photographer.... If you baby your tech equipment.... If you will be using it in a controlled setting.... then the cool pix could be for you

But if you're living the lifestyle it shows in the commercial with Ashton Kutcher at a party with a pool, drinks, and hot models, that camera is not for you.

Whatever you may get today, have a MERRY CHRISTMAS!

Christmas Prayers

I keep flashing back to this time last year, thinking about the state I was in, what I was doing and how I was feeling.

Good news is I have improved from last year. 

The combination of steroids, zithromax 250 mg daily, mepron and photopheresis ALONG WITH INCREASING EXCERCISE seemed to help my lung ailment: bronchiolitis obliterans.

Let's not get confused. I'm not "cured." I'm not cured but coping. 

What I remember most clearly from last year is Xander talking about praying to both God and asking Santa for me to be healthy by Christmas. 

On Dec. 22, I was still hiding at my house in fear of ever having to go back to the hospital again, praying that I, nor anybody else, would ever have to experience what I went through in October. 

And I was recovering from H1N1.

I was contemplating stopping my medications.

 I was accutely aware that my life was so fragile I would not survive without my daily pills. 

I thought a lot about the difference between dying while actively fighting for life and dying by stopping my medications. 

The latter was a choice I was becoming more comfortable with.

 I was having trouble seeing the difference between the two choices.

 I felt so detached. My mind barely registered that I had a tube in my chest. I couldn't tell you if I had a cut on my toe. I remember lying on the couch in pain all day and wondering if anyone knew what I was thinking and why, if I was choosing to die, or dying, was nobody visiting.

 But I lived for my couple of hours each day where I put on my brave face and got x up and moving for school or the hour after school where we'd (well he'd) sled like a penguin or try to get in on a game of 3-on-3 at the gym with the junior high kids. 

Those kids were some good kids, even though they both had their teams, x would walk on the court and put his arms up. The guys would look at each other and play around him, every once in a while letting him change possession of the ball or give him a little shoulder nudge. 

He loved it. 

J was being the perfect husband. He made sure we had nightly meals and that our cupboards were always stocked and both X and I were fed and happy.

The whole time I couldn't breathe. I'd spend my days contemplating life like this, wondering if I'd become more of a burden than a contribution and thinking about X's wish. 

On the 22nd I went to Dr.G to get the steroids I knew could turn me around by Christmas. 

God helps those who help themselves. 

AND I was healthy by Christmas! 

I started to be able to walk more. I had more energy. I could walk longer distances. I would pace, slowly, just because I could.

I never want to take my breath for granted again. 

It's so hard not to.

I was healthy, EXACTLY what x had prayed for. 

It was a very concrete answer. 

I caught x muttering, "Next time I want it without medicine." under his breath once while we were discussing my disease.

We talked about that. God had known what we wanted. X had asked that I "get better," but he didn't specify how. 

I was better with chemo, steroids and pheresis. 

We felt like we'd been bamboozled, like God had found the prayer loop hole and exploited it. 

We'd known (had faith) that it would come true, but the "how" we"d left to the "professionals." 

Well, at least that's how I felt.

So we didn't talk about x's christmas wish during the year. 

I was doing better. 

Life had turned into some kind of normal.

 Our family got into a relative routine and x started to feel more secure, but of course, the Christmas season came rolling around and along with it more health issues: bone marrow failure, pneumonia, opportunistic infections plagued me.

I was still improving in the lung department though. I had found a fabulous pulmonologist out of Boston who I trusted with my life and decisions. Together with my hematologist and transplant specialist we'd worked out an effective plan of treatment.

I'd  ditched my chest tube and oxygen tank and come around to being able to play X one-on-one myself. We'd set up at mini-pro basketball hoop and it was on nightly in the kitchen. 

I was starting to get winded waaaayyy to early. I was bent over, sweating, gasping for breath and cursing my awful body all at the same time when x says, exasperated, "Mom, you knooow (put his sassitude in those two words) if you want to get better, all you have to do is ask."

I stopped and looked at him. Silent. Speechless. 

Soooooo, all this time HE had decided his prayer was answered!

 He was ok with the outcome. 

He had gotten what he asked for. 

I had been the one who felt jilted. I was the one who felt bamboozled, and I wasn't even the one who asked! 

Yes, it's true, folks. I have difficulty praying for God to save myself. I lie in bed, and always think of something bigger and more important to more people. It has been for health care reform or for someones safety or someone younger's health. 

I know, I should at least should pray for something global that will help me like to find the cause of the blood cancer's in my area. 

IT had been me that was unhappy with the answer the whole time, and I'd projected it onto my son. As a child he understood he had prayed and his prayers were answers. No questions asked. Him and the big guy were good.

It was me with my adult ego who thought , maybe, I knew better. 

But I don't. I do know that last year God and Santa did answers Xander's Christmas wish and I have all the faith in the universe that what I'm experiencing has a purpose.

Xander's prayer and its answer gave me much more than a straight cure could have. It taught me about myself, my personal resilience, and now I get that even though I may die from this, it doesn't mean tomorrow and it may not even mean in the next five years.

Answers to prayers can be tricky like that, but they do get answered, especially Christmas ones.

Resolution? What resolution?

Xander has been diagnosed.
He's dyslexic.
He fits the textbook definition almost perfectly, which is a "severe difference (somewhere between 15-30) in IQ and reading/writing performance."
At least that's the way I remember it, but I'm checking it just in case.
WHOA. Wait a second. Wikipedia says IQ and dyslexia have nothing to do with eachother.
Hmmm. This is the problem with science. Nothing can quite keep up. 
If causes are under "theories" can you really define what it is? I mean, if you don't know where it comes from can it still be defined?
That sounds like a silly question.
Clearly we know Hodgkin's is Hodgkin's even though we don't know where it came from, but there are still pieces missing to our definitions of Hodgkin's too.
Like the cure, Thank you.
That's what I'd like for Christmas.
It's odd to me that a disease first written about in 1666 (creepy, I know), more thoroughly studied in the 1830's would not come with a cause.
The only (TWO) other cancers then had clear causatation, something like naso-pharyngeal cancer and smoking.
Most cancers appeared after the industrial revolution when pollutants were increased in the air wit unknown long term side effects.
So, in theory here,if someone can go back and find the pollutants in the area of the first diagnosis of Hodgkin's in 1830s (or any and all environmental descriptions) they'd be that much closer to finding a cause.
Then that information could be cross referenced with environmental descriptions of areas with known clusters, such as my neighborhood.
Eventually, I would broaden the search and cross reference all blood cancers.
Since my diagnosis in 2006, three other people within a mile radius have been diagnosed with a blood cancer requiring a bone marrow transplant. I am confidant saying that something within this immediate area is causing bone marrow failure.
I was first diagnosed with Hodgkin's Lymphoma in April 2006.
The following year in Carol Snelling was diagnosed with Leukemia in her 50s. She also resides on River Rd 3/4mile from my home and had for decades. She was residing here. She passed away during her transplant.
Twenty-one year old Ashley Jordan was diagnosed after that. Her hodgkin's disease also reoccured after initial therapy. She required a auto-transplant and remains in remission.
Then, of course,how could anyone forget Andy? X's very best friend in first grade. He was diagnosed with leukemia requiring a transplant. He had a form rarely seen in children, but commonly seen in adults, such as Carroll Snelling.
So I've never really been a resolution girl.
I've more been an idea girl.
It's easier to make goals around the new year.
It also fits in with the weather and season. 
I beat you can tell what I'm now looking into. Just for kicks. And I think it's time I started writing more again too.

Silly me.
I thought I could be "Super Mom" to a seven year old during Christmas and still have a life, any life, what so ever.
I had schedule in rest time this week in hopes of staying healthy during the holidays.
Apparently the stomach bug X had last week is not the same one going around his school this week.
Merry Christmas.
It kicked in last night, right before his night-before-the-party-decision to bring gifts for EVERY CHILD IN HIS CLASS.
Now, this is a repeat from last year, but last year he'd discovered he had enough beautiful rocks for each person in his class. Yes, pretty rocks for every one. He took care of it. I had to do nothing.
This year the ante was upped. He'd talked about it for almost a month. The girls would get earrings I made and the boys would get ornaments. He thought. . . Maybe. . . . 
Guess who had no ornaments or earrings put together last night at 8pm?
Guess who had those presents wrapped in sandwich bags and napkins this morning at 6pm?
Yep, that's the same mom that said Tuesday, "You have to pick now, as in TONIGHT, or else we won't do it. There is no procrastinating. It just makes you stressed."
Of course, then comes the little voice, "What's procrastinating?" and it's then  I know I'll be doing whatever he needs when he wants it.
Unfortunately for me his stomach ache took him out of the wrapping process.
Afterwards I was immediately thankful I hadn't given in to my fatigue.
 Making the ornaments turned out to be really fun. All we did was take clear glass ball ornaments, fill them with paint then shake the ball, but of course that turned into an experiment.
Absolutely X's thing, but I'm Christmas presented out.
That just doesn't sound right.
There isn't a word in English for this feeling.
Is it wrong for me to just want to lie on the couch, cuddled in my blanket receiving presents for the next couple days?
Thank goodness J starts vacation tomorrow. After the holidays we have a whole week together to enjoy.

I "LIKE" Mederma

And even better, I can just click and donate a dollar to the Young Survival Coalition!

Mederma, best known for products to reduce the appearance of scars and stretch marks,  re-launched their Facebook page: www.facebook.com/Mederma 

in partnership with the Young Survival Coalition! 

For each new “like” they receive in December, Mederma will donate $1 to YSC, up to $5,000.

In the spirit of the holidays, and to help youngins' like me survive, please take the time to "Like" the facebook page.