Short intro about the blog

This blog is about our journey to healing with Grade 3 Anaplastic Oligoastrocytoma

Saturday, September 29, 2012

Healer in Two Hearts?

My goodness, so much has happened I don’t even know where to begin.  I have been completely sans-computer for over a week, and it’s been impossible to stay in touch with anyone online, let alone update the blog.  My apologies!  It looks like my PC needs a new hard drive, so hopefully we’ll be able to work that out soon.  For the moment, I’m stealing a few precious minutes on Adam’s work PC while he is at the grocery store with his parents.

We returned from New York last weekend, and Adam had his first appointment at the new clinic in Aldie on Tuesday.  We both really like the doctor we met with.  Correction… I absolutely LOVE the new doctor.  Her name is Dr. Stone and I can’t say enough good things about her.  The clinic is beautiful, and surrounded by countryside and breathtaking views.  It’s perfect.  And the best part is (delivered in hushed tones and furtive glances)…. they are going to do the B17 infusions!!  We have to order it ourselves because the clinic can’t get it.  We have a special secret phone number for a clinic in Mexico and a code word to use when ordering.  Very cloak and dagger.  I love it.  But, we are over the moon that Adam will be able to get the good stuff, and the Schachter Clinic was pretty excited, too.  Apparently it can be really difficult to find clinics that are willing to infuse the B17 because they just don’t want to get involved.  Thank God for small family-owned clinics in small-town horse country.

Other than that, Adam feels wonderful although his first time driving in 9 months on uneven winding back roads was horrific.  We were both thankful to arrive there and back in one piece.  And next week, Adam gets to do the drive by himself.  Maybe it’s better that way.  Surely his confidence will soar when he doesn’t have to see his wife clutching the door white-knuckled, feet braced against the glove compartment, sucking her breath in with overdramatic force around every turn.

I also had my own mini adventure this week.  I found a suspicious lump in my breast a couple of weeks ago, but I wanted to get Adam’s trip to New York out of the way before seeing to it.  I booked a thermographic scan at a center in Ashburn for the 27th, and I was a bit antsy the few days leading up to it.  Actually, I was downright bitchy.  My mother-in-law came with me for support, and was wonderful company while the GPS led us all over Sterling and Ashburn miles away from the actual imaging center.  We finally arrived 10 minutes late, and I was whisked into the examining room as soon as I finished filling out the new patient forms.  The thermographer was really awesome, and I highly recommend her if any of you locals are considering having one done.  Family Thermal Imaging in Ashburn.  Tell your friends.  Anyway, she scanned my torso from several different angles, which took maybe a minute, and then talked through the scanned images with me.  Thankfully, the lump is nothing to worry about.  There were no “hot spots” in that area of my breast.  However, the scan wasn’t totally clear either.  There were a couple of patches that showed irregular vascular activity.  She told me not to panic… there’s no need to run out and book an appointment with an oncologist.  But, there are definitely some early signs that I have a couple of spots that can potentially develop into cancer (8-10 years down the line) since there are detectable abnormalities already.  Not exactly the news I was expecting.  I had figured either the lump was a big scary fatal tumor, in which case I would immediately contact TLC and pitch a reality program starring our family, or it would be totally clear.  She told me there is a lot I can do to prevent cancer from forming, and suggested I look into a good detoxing protocol.  Well, HEY we’re doing that already!!  I can also start applying frankinsense to my breasts to help detox.  We’ve read a lot about frankinsense and how it can help with active cancer, so this sounded like really good advice.  As luck would have it, we happen to have a bottle of it that was recently passed onto us via my in-laws, so I can start with that immediately.  I’m also following Adam’s new crazy-healthy vegetarian diet, and I really really want to look into getting an infared sauna.  Ali should have one, Adam certainly needs one, and now it looks like I should be using one, too.  You can get little 4 foot single-seater saunas, and I have an idea of where we can put one.  In the meantime, I *really* need to order His and Hers enema kits so we can start doing coffee enemas.  I’ve read a lot about them, and the New York clinic highly recommended that Adam start partaking of daily “coffee breaks” in the bathroom.  I can just picture the kids pounding on the bathroom door… “But, Mummy I need your help NOW!”  Sorry, kids, but Mummy is completely indisposed at the moment.  Actually, it sounds quite appealing having 15 minutes all to myself to read, meditate, pray, whatever.  I just may have to sedate the children to make it work.

Sunday, September 16, 2012

Best... Day... Ever!

We have had the most amazing weekend, and well, you know me.  I just had to share!  Yesterday we decided to go out exploring, and went out to Nyack to try to find Mountainview State Park.  It was on Google Maps.  It was supposed to be right there off the motorway on Mountainview Road.  Well, we drove up and down Mountainview Road and never found Mountainview State Park.  Shame, really.  It looked beautiful from the satellite view.  Anyway, we stopped at a Shell station to ask the locals were this darn park was.  No one had heard of it.  However, they did direct us to Rockland Lake Park, which was wonderful.  It’s a big lake with a walking trail around it, measuring 3 miles.  We walked the trail in such beautiful weather it nearly made me cry.  The sky was so blue, and the breeze was perfect.  For a few moments I lost my sense of reality and thought I was in Finland.  I can’t remember the last time I felt so blissful.  Then we returned to our hotel for a quick lunch before heading off to the home of my Aunt Jan and Uncle Cary.  What I like best about being up here for Adam’s treatment is I KNOW this place.  I could’ve driven to my aunt’s with a blindfold on.  We are less than 15 minutes away.  After all the welcoming kisses and cuddles we got great news:  my Aunt Marie and Uncle George were coming, too!  I hadn’t seen them in years, and I was so excited.  They are actually my dad’s aunt and uncle, but they’ve always been “aunt” and “uncle” to me.  They also brought their son Mark along, and I can’t remember the last time I saw him.  It was a great big family reunion!  We had so much fun catching up with everybody and gorging on ridiculous amounts of food.

Later that night, my cousin’s husband Tom had his adoration hour at the chapel and we were invited to go along.  He had asked friends of theirs from church to meet him there to pray over Adam.  After a few silent moments of reflection in the chapel, Tom started waving and motioning for Adam to come up to the front.  Adam and I kneeled at the front of the chapel and suddenly we were surrounded by people, all laying their hands on Adam and me.  Tom began to read and led everyone in prayer.  It was amazing.  The energy kept building as everyone took turns praying aloud and begging Jesus to heal Adam.  Adam and I were holding hands, but for a few moments I couldn’t tell whose hand was whose.  They seemed to just melt into one.  It was beautiful, and Adam and I were both shedding tears.  When it was over, one of the men told us to “take as long as we needed”.  Unfortunately, I had tears and snot running down my face, and I didn’t want to distract everyone from the beauty of what just happened with my loud snorting.  So I quietly left the chapel and Adam followed.  We were both a mess, and I hadn’t any tissues with me, so we cleaned up best we could with bare hands and my cardigan.  I felt a little bad when one of the men came out and introduced himself, and held out his hand to shake.  I prayed I wasn’t spreading some horrible communicable disease to one of the lovely people that may have been instrumental in saving my husband’s life.  After a few minutes spent meeting everyone and having a brief chat, we went home buzzing and looking forward to Sunday Mass.

This morning we relaxed a bit since I had a vicious migraine.  An Imitrex tablet helped clear it so we could meet my aunt and my cousin’s family at their church.  It was lovely, and mainly for the reason that Mass without Finlay is quite a treat.  We sang, we participated in prayers, we listened to the homily.  And boy were we surprised when Adam’s name was mentioned during the prayers for the sick!  My cousin Andrea arranged that one, and both of us were really touched.  After Mass we bid everyone goodbye and went to the Marian shrine less than a mile up the road.  It was awesome.  We spent a few quiet minutes in front of the 50-foot statue of Mary, then went for a walk on the trails around the property known as Rosary Walk.  I got out my grandmother’s rosary, and we prayed together while walking through the trees.  It was absolutely beautiful.  Then to top the already wonderful day off, we went out for Mexican!!  We ordered shrimp fajitas for both of us, and man were they good.  Adam and I go out to eat MAYBE twice a year, and this was such a treat.  I’m still bloated beyond comfort, and I will definitely be skipping dinner.  The past few hours have been spent linking up with the folks back home and seeing our beautiful boys, who I miss so much I can’t stand it.  We will be staying until Friday, and driving home Saturday.  This week I’ll be on the phone trying to coordinate Adam’s treatment when we get back to Virginia.  I’m hoping we will find a clinic (one in Aldie looks promising) who will continue Adam’s intravenous treatments when we return.  Unfortunately, one of the supplements has to be ordered from Mexico, and some doctors don’t seem crazy about the fact that it’s kinda illegal.  It isn’t ACTUALLY illegal, but the FDA has made it impossible to get and has convinced most medical professionals that it is in their best interest not to prescribe it.  Thank you, once again, to the feds for making keeping my husband alive a challenge.  Appreciate it.  Hey, wait a minute… my Aunt Marie is Italian!  Maybe she’s got a couple of burly cousins who can go over to the FDA headquarters and break a few thumbs.  Well, you gotta do watcha gotta do, hey?  Wow, one week in New York and I’ve turned all Brooklyn.  I better get back to Virginia before I find myself with two-inch long acrylic nails and crazy big hair.

Wednesday, September 12, 2012

Round Two

We made it!  We are here in New York, and have come to the end of our first day at the Schachter Clinic.  What a long day.  I don’t understand something about these cancer clinics.  I don’t understand why they don’t allow patients to have a lunch break.  Our first day at the Burzynski Clinic back in February was so unbelievably long.  You get there when the doors open in the morning, then have appointment after appointment until the administrative staff follow you out at the end of the day to lock up.  We were exhausted and starving by the time we got back to our condo.  It was the exact same routine this time around.  We were at the clinic at 8:30am.  We had back to back appointments until 1:30pm, then Adam was hooked up for IV treatments for three hours.  We finally got back into the car to head back to the hotel after 5:00pm.  I was so hungry I could have eaten the steering wheel.  But, who cares about me… what about the patients?!  These poor sick people need to eat, for crying out loud!  Adam survived, naturally, but I just don’t understand why they do this to their new patients.

Anyway, the first day went swimmingly.  We first went over Adam’s medical history with the physician assistant, then Adam had some blood drawn for labwork.  We met with Dr. Kopelson after that, and we both really liked him.  I spent a moment perusing the titles lined up on his bookshelf, and I was really impressed.  I’ve read most of them, so we were literally on the same page!  He has prescribed IV Vitamin C, amygdalin/laetrile, and something I can’t pronounce or remember at the moment.  Adam will also be taking a boatload of vitamin supplements, but that’s no surprise.  A couple of them where ridiculously expensive, though.  I can’t wait to see how God works out the finances on this one!  Then again, He came through when we were paying the Burzynski Clinic for 6 months, and if He can do that, He can do anything!!  Adam will start adding one supplement every other day until he is following the full protocol, which I think included about 10 supplements.  Our diet is already spot on, and the nutritionist was very pleased.  We just need to tweak a couple of details, and it’s now essential that we get grass-fed pastured meat, and highest quality fish for our protein sources.  Adam has been told to completely avoid commercial meat, poultry, fish and eggs.  Thankfully we live in the country and have a lot of choices as far as pastured meat goes.  I just wish it wasn’t so horribly expensive.  And the vegetables really need to be organic from here on out.  Especially with juicing, which we’ve been advised to do 2-3 times per day.  Dairy needs to be raw, and grains need to be whole and organic.  I’m glad I know all this already, but it also helps to be reminded.  I’ve been sliding on the quality of food we’ve been eating over the past year, mainly due to financial pressures.  However, it really would be better for Adam to miss a few meals, then for him to consume dangerous pesticides or hormones.  In fact, with two children in our family having neurological conditions, and with my various minor health issues, we ALL need to be eating like this.  We’ll find the money somehow, even if I have to turn tricks to make ends meet.

It looks like we’ll be staying up here until the end of next week to ensure that Adam gets plenty of IV treatments in before we head back to Virginia.  There are a few clinics within an hour from Berryville that do IV treatments, so we now need to figure out which treatments they offer and how much they charge.  Adam will need to have two infusions per week of the three supplements.  This treatment will be his new part-time job and will unfortunately involve some commuting.  But, it will certainly be less grueling than the Burzynski treatment, and will make Adam feel BETTER not worse while he’s on it.  He was literally bouncing after he got his Vitamin C today!  So we are both feeling excited and positive about this new phase of treatment.  And we’re praying that this approach actually works.

Saturday, September 8, 2012

Off the Grid

There hasn't been much to write about the past week, as we've just been counting the days until our trip to New York coming up.  I also have had nothing to type ON.  My PC died over a week ago, and I feel like I've lost a limb.  At least 100 times a day I encounter a need to get onto my computer, only to look over at the closed doors of my computer armoire and sigh.  Adam's computer has also been acting up, and our laptop finally bid farewell to it's already disabled spacebar.  We bought the laptop two years ago for Adam to use for work on those rare occasions that we need to travel.  We had it for less than an hour when a 6 month-old Finlay climbed up and ripped off the spacebar.  I managed to finagle it back on, but it never worked quite right.  When it fell off for the last time a few months ago, we began to use the little rubber nobble located beneath the spacebar.  That finally rubbed off completely, so the laptop is now fairly useless.  You would be amazed at just how necessary a spacebar is.

On Tuesday we will be driving up to New York and we are so excited!!  There has been so much to do to prepare, booking a car and hotel, getting an EKG done and collecting all of Adam's surgery notes, labwork, MRI reports, etc.  Not to mention the daily deluge of bills from everyone with a medical degree who's ever HEARD of Adam.  I swear the nurse that swabbed the surgeon's forehead submitted a separate invoice.  Those of you lucky enough to have insurance never get the privilege of dealing with all this crap.  It's an unbelievable amount of paperwork, and has become a part-time job.  Now we also have a separate pile of bills from Calum's surgery to further complicate matters.  I can't even begin to deal with those right now, and UVA will just have to wait until we get Adam's next treatment protocol underway and I find to the time to feel like calling them back.

Hopefully we will be able to get the laptop looked at while in New York so I'll be able to keep everyone updated.  For now I'm stealing moments here and there to jump on Adam's work PC and check a few emails.  Otherwise, I'm pretty much offline, and best to be reached by phone.  You know, the one with the really long cord.  Does anyone else remember when you used to have a corded phone (you know back in the 80s), and it would get all wound up so you had to lift up the cord and let the phone spin around until it worked out all the coils?  Damn that was fun.  And I get to do it all the time!  Hey, maybe we should just go the full-Amish and just do away with household electricity altogether.  I would love any excuse to get rid of that darn Wii.