Short intro about the blog

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

Sunday, August 26, 2012

God's Road Signs

After I wrote and published my last post, I started once again to do some research.  When you come to a dead end, you turn around and go back to the beginning.  I went to my “cancer” shelf on the bookcase, and pulled out The Alternative Guide to Your Cancer Diagnosis.  After looking under “brain cancer” in the index I was directed to page 311.  I read a short excerpt titled “Success Story:  Brain Tumor Treated with Magnetic Therapy”.  I liked what I read.  After testing for nutritional deficiencies, hormonal imbalances, and toxic metabolite exposure, Dr. Schachter put the patient on a nutritional program with several oral supplements including shark cartilage (a big one in the cancer world right now), amygdalin, antioxidant and immune-enhancing vitamins and herbs.   He also had the patient wear a powerful magnet placed against his head and held in place with a headband for several hours each day.  Nearly 5 years later, the patient who had originally been told he had 6-18 months of survival was doing well.  The tumor had not grown at all while under the treatment.

I decided to look up the doctor’s website, and was immediately greeted by a photo of Dr. Schachter himself.  I couldn’t believe it.  He looks so much like Adam’s father.  Really he’s a perfect cross between my father-in-law and a friend from Nottingham named Ian Campbell.  Huh.  I decided to find out exactly where this place is.  I brought up Suffern, NY on Mapquest and was momentarily stunned.  The clinic is exactly 15 miles from my aunt and uncle in Stony Point.  Double-huh.  Okay, Vanessa.  Calm down.  Breathe.  Is this where we are supposed to go?  It can’t be.  This is way too quick.  It’s been less than 12 hours since Adam was taken off the antineoplastons.  Could God really be directing us already?  Would he send us a sign this quickly?   I asked God for more signs.  I asked Him to be absolutely clear.  No fooling around.  We need to know that this is definitely from You.

I don’t know if you remember 7 months ago when we were trying to figure out where we needed to go for Adam to start cancer treatment.  We asked for sign after sign after sign.  God was beating us over the head with the endless Houston references, and yet still I begged for assurance.  I could imagine Him with His hands on His hips going, “Alright already!!”  Well, this time I’ve been just as annoying.  New York?  Are you sure?  Well, despite my reservations, He’s been revealing His intentions to us once again.  Twice in two days I loaded up the internet to be greeted with “New York” in bold.  The news headlines have been focusing on the horrible shooting that just occurred there.  I’ve also been reading a memoir about a woman who was a plural wife in a fundamentalist Mormon group.  I noticed yesterday morning that at the bottom of the cover it reads, “From the New York Times bestselling author of Shattered Dreams.”  I went to show it to Adam, and he replied, “Now all we need to see is a Chevy HHR with New York plates!”  I stared at him with my mouth gaping wide.  He looked at me with a questioning look, and I said, “Honey… we DROVE a Chevy HHR with New York plates when we went to Houston!”  Finally, yesterday we were out for much of the day running errands.  When we got home there were a few messages on the voice mail.  Adam was listening to them and suddenly said, “Oh, Father Dobbins called… how nice of him.”  Father Dobbins is our parochial vicar, and has been so wonderful to us since this whole journey began.  A moment later Adam looked confused and said, “Wait, I don’t know who that was.”  He played it again for me to listen.  It was clearly Father Dobbins’ voice, but for some reason it was saying, “This is Timothy from the Schachter Center calling to see how Adam is doing today, and wondering if you had any more questions after taking to Anita yesterday.  If you would like to call me back, my number here is…”  I couldn’t believe it.  Adam said, “We are definitely going to New York now.”  Suffern, here we come!

Friday, August 24, 2012


It’s 5:00 in the morning, and I just can’t sleep.  Adam and I have been talking, holding hands in the dark.  The bedroom is actually dark for the first time in 6 months.  And completely silent.  The whooshing of the pump is gone, as is the pump’s bright display that used to cast a glow around the whole room.  It’s over.  We received a call yesterday that shocked both of us to the core.  Adam’s lesions have grown since the last MRI 8 weeks ago, and there is now a third lesion.  The treatment didn’t work.  It’s worked for so many others.  It is the one treatment that gave us any hope of Adam seeing the boys grow up.  He probably won’t ever get to meet his grandchildren.  He probably won’t see his boys get married or finish school.  He may not ever get to hear Finlay say "Daddy".

We are both so confused.  God led us to Dr. Burzynski’s clinic.  We know that.  The Divine landmarks were so clear.  Some signs were subtle, others blatant.  We were meant to go there, and this treatment seemed made for Adam.  Why didn’t it work?  Why the horrible 6-month detour?  Adam will never get those 6 months back, and right now every month counts.  He’s been like an old man, unable to wrestle with his three young boys.  Unable to take them to the park, or hike the beautiful trails we are blessed to have nearby.  The kids’ lives were put completely on hold.  When God paves a clear path for you, when He asks you to go somewhere and do something so very hard, it’s supposed to work out, right?  When you do what He tells you… it’s supposed to end well, isn’t it?

We don’t know what we are supposed to do next.  We have discussed a few options, but they all look so awfully wrong.  The Burzynski clinic is encouraging us to come back to Houston so he can start gene-targeted therapy.  It just feels wrong.  First of all, we need to come up with $30,000 to start the other treatment, not to mention all the expenses of going down there.  It makes both of us nauseous just thinking of going back to that place and starting over.  The monthly cost of the treatment is over $20,000.  And it has a much lower rate of success than the antineoplastons.  Not to mention the horrible side-effects of the drugs.  Adam just doesn’t want to go there.  Another option is maybe Dr. Gonzalez in NY.  His protocol is absolutely grueling.  It’s a massive total-body detox, involving several coffee enemas a day, a dozen freshly-made juices a day, liver flushes, handfuls of vitamins and enzymes several times a day… it would make the last 6 months look like a freaking holiday.  And we don’t know if he’s had much success with brain tumors.  Finally, we could go back to England.  Adam could receive radiation and chemotherapy on the NHS, which might buy him a couple of years.  It would destroy his body in the meantime, and might disable him to the point where he couldn’t enjoy the boys during his remaining time with us.  Adam doesn’t want it.  He actually groans everytime I mention the possibility of chemo.

I looked into my trusted Streams in the Desert last night and it didn’t fail me.  What I found was this:
            “It is faith without sight.  When we can see, it is not faith, but reasoning.  In crossing the Atlantic we observed this very principle of faith.  We saw no path upon the sea, nor sign of shore.  And yet day by day we were marking our path upon the chart as exactly as if there had followed us a great chalk line upon the sea.  And when we came within twenty miles of land, we knew where we were as exactly as if we had seen it all three thousand miles ahead…  So faith looks up and sails on, by God’s great Sun, not seeing one shoreline or earthly lighthouse or path upon the way.  Often its steps seem to lead into utter uncertainty, and even darkness and disaster; but He opens the way, and often makes such midnight hours the very gates of day.  Let us go forth this day, not knowing, but trusting.”

That’s all we can do right now.  Trust in Him.  We are looking for signs and instructions from Above.  We will go wherever He tells us to go, and we will do whatever He commands.  Our faith is all we have.

Saturday, August 11, 2012

Pump Woes

I’ve realized that I never formerly introduced our friends and family to the newest member of our family:  the BodyGuard 121 Twin Infusion System.  We call him “Phil” for short.  Well, actually, the FIRST pump we had was called Phil.  Before we had even left Houston we had already bid Phil goodbye and welcomed a replacement pump into our lives.  The first pump had major issues with priming, which is when we get all the air out of the bags in preparation for infusing.  I would kindly ask Phil to prime the air out, but he would refuse time and time again.  “Down Occlusion” he would snidely tell me, and no matter what I did, he would stubbornly refuse to prime.  So, we said goodbye to Phil.  Pump #2 was great.  I guess we never got around to naming him.  I was still hurting a bit from the fast and furious relationship I had with Phil, and wasn’t interested in building an intimate relationship with this one.  I just wanted him to work.  And work he did!!  Boy, could he prime.  He was consistent with his infusions and never let us down.  Good old #2. 

A few months passed and we got the startling news that Adam’s tumor was growing again.  We would have to increase the dose, and would be doing so in increments of 40ml per infusion per day.  Now, Pump #2 had had it quite easy up till now.  As long as the waters were smooth, #2 was reliable.  But, just like many fair-weather friends, he couldn’t handle the change in dosage.  Actually, it was a little more complicated than that.  It seems that #2 was not as consistent and reliable as I had always thought.  #2 was over-infusing all along, and I never suspected a thing.  Once we switched to three bags a day, however, his shenanigans came apparent, and we had to make a decision.  I loved #2, I really did.  But our nurse was worried about Adam overdosing on his meds.  Overdose, shoverdose.  #2 was a good pump.  So he was a bit fast.  We all have our faults.  Couldn’t we just keep #2?  NO.  The decision was made.  We would have to switch out #2 for a new pump.  So along came #3.  I was very wary of him right from the start.  Would he suffer from the same priming paranoia of Phil?  Would he infuse too fast?  Too slow??  I was starting to loose my confidence in BodyGuard and their pesky temperamental dual-infusion pumps.  I had no choice but to welcome #3 into our family, but I was determined not to get too emotionally involved.  I’d been disappointed and hurt before.  Not his time.

Things started off fine.  #3 primed without difficulty.  Adam seemed to be getting all his dosages, however it was a bit of an adjustment after #2.  I was used to Adam getting every drop out of each bag, but #3 left a little behind.  He was more accurate, yes, but I just can’t stand to see waste.  But, nevermind… I’ll just have to deal.  I needed to remind myself that #3 was giving Adam his exact dose, and that is what’s most important.  We were getting along fine until we got to the end of that first month.  Then #3 showed us his true colors.  He was a tightwad.  Big time.  I’ll explain…  We only get a limited amount of tubing for the month, and I always start to run low well before we’re due our next shipment.  So I have to recycle tubing (shhhh, don’t tell the FDA!).  I might have to use a set of tubing for a second day to make sure I have enough to last the month.  We-hell.  Mr. #3 wasn’t having it.  He demanded new tubing every day.  He just knew, he KNEW when I had put in the previous day’s tubing for one more go.  “Missing Key” he would tell me again and again.  In BodyGuard-ese that means that there’s no tubing in the channel.  Um… yes there is tubing, jerk.  I just installed it myself.  But, no, he would out-and-out refuse to infuse.  So I’d have to get new tubing out and pray to God that somehow we would make it to the next shipment.  This was annoying, but after a few days of this he decided to kick it up another notch.  Now he decided that not only did he want new tubing everyday, but between bag changes as well.  You’ve got to be kidding me.  I can’t change tubing twice a day.  No way.  I’m sorry #3 but this relationship just isn’t going to work.  I’ve had it.  Clinic, send me Pump #4.

At this point I’m stating to feel like J. Lo with all her ex’es.  We all know that J. Lo is hard work.  Who in their right mind would want to be married to such a primadonna?  Clearly her failed relationships are a sign that she has some serious problems.  But, wait.  What if my pump problems were actually because of… me?  What if I’M the problem?  I started to doubt myself, and took a long hard look in the mirror.  I decided right there and then that I would really work, and work hard to make this new relationship a success.  It had to.  For the sake of my family, my children.  It was up to me.  I pasted a smile on my face and joyfully invited Pump #4 into our home.  This was it.  This was going to be the best durn woman-pump union the world had ever known.  I was taking a vow and determined to live it to the full.  But, I did something sneaky.  I… kept… Pump #3.  I don’t know why I did it.  I thought that maybe if #4 didn’t work out, I would have #3 to fall back on.  It was deceitful and wrong.  I know that now.  My fourth relationship was based on a foundation of lies, and doomed from the beginning.  It didn’t take long for that act of poor judgment to catch up with me.  I think he knew.  He must have known I had a former pump lingering in the wings.  He just couldn’t handle it.  Pretty soon I started getting “Air in Line” error messages.  This isn’t unusual.  I’ve seen it before with other pumps.  You just locate the air bubble, work it out, and restart the infusion.  Quite straightforward.  But, not with #4.  He was sensitive… too sensitive.  He started crying wolf a lot.  “Air in Line” he would whine, but there was no air.  I tried to calm him down, and sometimes after a good talk he would start back up again.  But, one time there was air.  It destroyed him.  I worked the air out, checked and double checked again.  There was definitely absolutely no air left in the line.  But, he just shut himself off from me and refused to listen.  I couldn’t break through his shell.  He was determined not to let me in, and I could see that this union was not the union I had hoped for.  Finally, I pulled out #3 so Adam could finish his infusion.  And this next part, I’m not proud of.  I started using them both.  I would use #4 in the morning until he developed his air-phobia, then would switch to #3 at night.  When I needed to recycle tubing, I would switch back to #4.  I did this for a week and it destroyed my soul.  I was exhausted.  Trying to work with two pumps was killing me, but I didn’t know how to get out.  I was in too deep.  Finally I called one of the IV nurses at the clinic and confessed everything.  She was gentle and understanding.  And she told me what I just didn’t want to hear:  “You need to get another pump.”

It’s now been a week.  This time it really has been different.  As soon as #5 arrived, I immediately shipped off #3 and #4 back to the clinic.  In the same box.  I shudder to think about what that journey must have been like with the two of them so close together, but nevermind!  I can’t think about that now.  I’m focused on #5, and so far things are going really really well.  He primes, he infuses, he accepts recycled tubing and (I’m a little giddy about this)… he actually infuses a little fast.  Tee-hee.  I’m really excited and I’m thinking this just might work.  He might actually be “The One”!  Okay, wait a minute.  I’m still talking about the BodyGuard 121 Twin Infusion System right?  It’s a pump.  Just a pump.  Man, do I need to get a full-night’s sleep.