Missing Virginia

There hasn't been too much to post about before today, so I just haven't been motivated to write anything.  I've had a few moments where "psycho-wife" has reared her ugly head, and it was best not to post.  I have felt unbelievable pressure regarding this treatment, and my perfectionist nature has made me very difficult to live with.  As if Adam didn't have enough to worry about, without his wife rolling around on the kitchen floor yelling 4-letter words at the top of her lungs.  I'm afraid to admit that, yes, that was me this morning.  I had forgotten to disconnect Adam at 8:10am so that he would be able to have blood drawn at the clinic at 9:40am.  There has to be an hour and a half between the last dose of medicine and the morning blood draw.  I've forgotten twice, and both times we had to sit around and wait for ages before the nurses could do blood work.  I hate it when I forget important things like that, and frankly in this situation it's unacceptable.  I have to get on the ball.  There is just SO much to remember and SO much that Adam simply cannot do.  It HAS to be me.  And I'm fearing that I'm just not good enough.  So, I'm beating myself up a lot, and it's helping nobody.

But, other than my psychological shortcomings, today was a really good day.  Adam is scheduled to be discharged Friday!!  That means we should be pulling up outside our home late Sunday night.  I can't wait.  Dear Lord, please don't ever send us to Houston ever ever again.  Virginia is where it's at, people.  Mountains, sunshine, rolling hills, sunshine, friendly people, sunshine.... and oh, I almost forgot, sunshine.  I will be streaking Berryville on a daily basis in celebration of the sun's gloriousness.  Prepare yourselves.

The other good news is that Adam is at his target dose.  Dr. Burzynski himself has been reviewing Adam's case, and for mixed gliomas the dosage can be lowered and still be effective.  Adam is NOT on any steriods and has not suffered any fatigue at all.  This is nothing short of miraculous.  Many patients have ended up in wheelchairs because of the debilitating fatigue.  And everyone has to take Decadron to keep cranial pressure down.  Adam hasn't needed any.  Everyone is really pleased with how well Adam is doing so far.  And Dr. Burzynski has a prediction... he believes that Adam's tumor will be gone within 2 months, and after 8 more months of maintainance treatment, it should never recur.  I LOVE that prediction.

A Speed Bump

Annoying.  After two pretty good days, I'm finding myself mildly annoyed.  Okay, maybe really quite annoyed.  We still have to go into the clinic over the weekend so the nurse can check his vitals, get a blood sample, and for Adam to have a consult with the doctor.  However, on the weekend, we don't get to see Dr. Barbara.  We just get a visit from the "weekend" doctor, whoever it may be.  They rotate, I guess.  Well, the doctor this morning was very nice, but told us the direct opposite of what Dr. Barbara told us yesterday.  So, now I'm annoyed.  Adam has been doing remarkably well.  They have been able to increase his dose by 40ml every single day since he started treatment.  That is not always the case with every patient, as often they have reactions or severe side effects that require a slower increase in dosage.  But, with Adam he's just flying through.  And, even more remarkable, at this high a dose nearly everyone requires a steriod to reduce the side effects, but Adam has not needed it yet.  Really really good.  So, today we were prepared to go up again.  Yesterday when we met with Dr. Barbara, she was concerned about dehydration.  Although Adam had drank 11 liters (yes that's right) of water, he had excreted 12 liters.  His weight had dropped by 2 pounds, so Dr. Barbara explained that he is probably dehydrated.  She recommended that we only increase the dosage by 20ml on Saturday just to be on the safe side, but to keep an eye on his fluid intake and weight.  So, Adam has been drinking and eating like a champ and polished off a massive dinner last night.  He drank even MORE water this morning to make sure his weight was back up.  He still came up a bit short on his fluid totals (intake was 12 liters, but output was 13 liters), but weighed in at a much healthier 155lbs. this morning.  But, the substitute doctor wasn't happy.  She thinks that Adam is retaining water.  What??  He excreted more than he took in.  He can't possibly be retaining water.  What the heck is he retaining?  His weight gain can be easily explained by the mountain of penne bolognaise I forced him to eat last night.  But, she refused.  No increase in dosage.  Fume, fume, fume.  I was really nice, very very nice.  But, I was steaming behind my smile.  He was trucking along so nicely, and was expected to reach his target dose on Wednesday.  We were hoping that would mean we could go home Thursday.  Now with no increase, that means an extra day.  I could totally understand it if he was suffering from side effects, but he isn't.  He feels great.  Fume, fume, fume.

But, I suppose the good news (delivered through a tight-lipped grimace) is that I don't have to do 2 bag changes today.  With the expected dosage increase, Adam would have needed 3 bags of medicine over the 24-hour period.  That would have meant a bag-change at 3:45pm (no problem) and a second change at 11:45pm.  That's pretty late for me.  In fact, it's awfully late.  And I would be *starting* the bag-change at 11:45pm, which would then require at least 30 minutes of bag-prep before I could hook him back up again.  Yikes.  I guess it's not a bad thing that I get to postpone that little nightmare for one more day.  Gradually, once we're home, I can move that back a bit so I'll be doing the nighttime bag-change at a more humane hour.  But, with the clinic's schedule (they don't open until 9:00am) the late change will be unavoidable as long as we're here.  Another reason to get homeward as soon as possible!

The Yellow River

Things are getting better!  Adam's chest pain is gone, praise be to God.  We're still not sure what it was, but the doctor suspects it might have been a bad case of indigestion.  We are now fully armed with Tagamet in case it happens again.  Adam is up to half of his target dose of the antineoplastons, and seems to be tolerating the medicine really well.  He has been a bit sluggish today, but then again so have I so it might not be the medication.  Fatigue is expected as he climbs in dosage, however.  But, the hardest thing for Adam to cope with right now is the urinating.  When he first started, the nurse said, "You will pee a lot."  I told her today that in future she *might* want to be a bit more specific.  "A lot" led us to believe that he may be going more than usual during the day, with a couple of wakings in the night.  What she should have said is, "Imagine you are pregnant with quadruplets.  Now imagine you have been forced to drink 6 cups of coffee in one sitting.  And now a large child is jumping on your abdomen.  This is how you will feel every 30 minutes all day, every day, through the night, regardless of where you are."  Adam literally empties a full bladder nearly every 30 minutes.   Lucky for him, he's a man, so he has been equipped with a 3-liter urination container for easy through-the-night depositing (he actually fills it twice before getting up in the morning).  He keeps it next to the bed and just goes when he needs to.  I don't know how women on this program manage.  Getting up twice every hour, having to disconnect the pump from the charger, gather up all the tubing, walk to a bathroom, collect the urine in a special collector... unimaginable.  But, even though Adam might have it a bit easier than others he is pretty tired nonetheless.  This totally beats nursing a newborn.

The training is now going surprisingly well.  I graduated to "bag-changes" yesterday, and the nurse let me know that she has never had a patient changing bags after only 3 days of training.  Apparently I'll get my trainee-of-the-month sticker shortly, LOL.  After a bumpy start, I'm really getting the hang of everything.  I disconnect Adam in the morning and flush his catheter.  Then he's "free" until we get to the clinic.  I get the previous day's stats off the pump, then clear it.  After Adam has had his doctor visit, I do the calculations needed to program the pump for the new day.  Then I prep the bags.  Before Adam is plugged back in, I sometimes have to draw blood for labwork, or change the tip on the catheter.  Then he's flushed and hooked back up to the tubing for a new day of medicine.  I'm getting to the point where I can prep the 2 bags in less than half-an-hour.  Thank goodness, because he will actually need 3 bag changes a day once he's up to full dose.  I think we can pretty much forget about homeschooling while Adam's on this program.  And eating meals.  And wearing clean clothing.  I thought I had lowered my standards quite drastically after #3 was born, but hey that was a PICNIC compared to this!  If we survive this treatment program with our sanity intact, I think we can just about handle anything.

A Hard Day

Today has been rough.  I try to be positive on this blog, but today I just can't even fake it.  Yesterday and today have been a bit overwhelming with the training and everything.  Today I had to prep a medicine bag and it took me over an hour.  I'm going to be prepping two bags, twice  a day.  I just don't have a spare 4 hours a day to be prepping bags.  The nurse said I would get better at it, today was just my first day, etc.  But, I just felt so deflated.  Bathing this morning was a bit of a challenge as well.  Adam has to make absolutely sure that the catheter doesn't get wet.  So we tried putting a sheet of Glad Press & Seal over his chest area, as suggested by the nurse.  It was a bit of a debacle at first.  Finally, I got it trimmed away and taped up, but Adam was still a bit wary of getting in the bath.  I cannot even imagine getting into a streaming shower.  If it does get wet, it's not the end of the world, but it does mean an extra dressing-change.  I just don't know how we are going to fit it all in. 

We also had an appointment with the radiologist which was a bit depressing as well.  We were misinformed before.  The current tumor was NOT there immediately post-surgery.  The post-surgery MRI shows a clear cavity.  But, 6 weeks later there was definitely a "suspicious" enhancement within the cavity.  It's no bigger than a pea, but it's probably a recurring tumor.  There's a small chance it might be nothing, only time will tell.  I don't know why, but that news really got me down.  Then I felt bad because I'm supposed to be the positive one.  I should be the cheerleader.  But, once again Adam was the one with the positive outlook, trying to lift me up.

We did however receive a lovely phone call from the famous Pete and Hannah.  I realize they aren't famous to you guys, but we've been watching their YouTube videos religiously and they left quite an impression at the clinic.  Everybody loves them!  Anyway, it was easy to see why after talking to Pete on the phone.  He is so positive and had such great advice for us.  Hannah is receiving the same treatment as Adam, and is about 6 weeks ahead.  She had a few ups and downs in the beginning, but is now doing really well.  It was just SO nice to talk to someone who is THERE and gets it.  This is so hard.  Friends and family have been unbelievably supportive, but there is no one else to whom I could have said, "I hate prepping bags" and would have known exactly what I was talking about.  This really is a tough and lonely club we have found ourselves in.  But we have met some wonderful people here, and you do feel so relaxed.  Everyone here has been through a cancer diagnosis, cried the tears, struggled through diffferent treatments, and ended up here as a last resort.  There is so much you don't have to say, and it's actually kinda nice.  No dancing around the cancer here!

Finally, if you all could please add to your prayers...  Adam is having a bit of chest pain.  Dr. Barbara isn't concerned, but it is really starting to wear Adam down.  We aren't sure if it might be a bad case of indigestion, a chiropractic issue (his posture has been horrible since starting to lug the bag around everywhere), or perhaps a respiratory infection.  I really hope it gets sorted out soon.  This treatment is challenging enough without any added pain.

Expecting?

Wow.  The past two days have been just... wow.  So much to learn, it's almost frightening.  On Friday, we had our first day of training, and had so much stuff thrown at us in just a few hours.  Adam got hooked up to the pump and medicines for the first time, and they did a "testdose" to look for any acute allergic reactions.  He did fine.  Our training nurse Gina showed me how to change his dressing every other day.  This will be indefinitely, as long as he has the catheter in.  She also showed us how to flush the catheter and how to inject Decadron in case Adam suddenly has a bad turn, in which case I would have to get a steroid in him STAT.  We will have two weeks to learn everything.  I have no idea how the pump even works yet.  That will come later.  We were just so amazed at how many supplies this new lifestyle will require.  We were given a huge box (like diaper box-sized) filled with latex gloves, alcohol wipes, syringes, needles, vials of Decadron, tubing, pump charger, etc.  And that's only a 2-week supply.  That doesn't even include the giant bags of medicine.  Adam has 2 bags of medication that he has to lug around with him all day, including the pump.  It is actually really funny seeing him standing in the middle of the living area with this black camera-bag over his shoulder.  I have to keep resisting the urge to say,"Put your bag down and make yourself comfortable!"  The larger bag is similar to those IV bags they hook you up to in the hospital, and there's a smaller bag as well.  He will be going through at least 1 or 2 bags a day.  So you can imagine just what 30 of those bags would look like for a month's supply.  Where on earth are we going to put this stuff?!  Our house already looks like someone lifted off the roof and emptied a Walmart into it.

We also had a meeting with the nutritionist, which was great.  Adam has been losing so much weight, and he weighed in at an alarming 147lbs. yesterday.  He was 175lbs. in October, and he was lanky  then.  We told her what we had been eating, which is great, but just not enough calories to sustain a 6-foot male.  She estimated that we were only consuming about 1200 calories a day, when Adam needs around 2400.  We were both so surprised.  We eat SO much food.  But, in reality it's about 75% vegetables, which have too few calories.  Giant bowls of vegetable soups, humongous salads, and piles of fish, porkchops and chicken just aren't going to cut it.  So, for the sake of Adam's health we need to add in some new foods.  He will be eating more nuts and seeds, and we will be adding more cheese and yogurt back in as snacks.  Of course, the quickest way to put on pounds would be to eat wheat products, but he can't do it with his allergy.  I've also read that when farmers need to fatten hogs quickly they feed them skim milk.  But, I think Adam is happy with the coconut milk for now.  He can go back on cow's milk when we get back home and he will once again have access to raw milk from the farm.  I learned a lot from her presentation about foods and calories.  But, it was almost comical to see it from Adam's perspective when he needs to gain weight.  There would be a photo of a croissant or scone on one page with a full 5 course meal on the other page.  It would show how the calories were similar.  For someone trying to lose weight, she would tell them,  "Look how much food you could have instead of that scone for the same calories!"  But, with Adam it was, "Look how many calories you could get from just one little scone!!"  I would like to point out that *I* haven't lost any weight on this new regimen.  Not that I was trying to, but I was thinking if I lost a few pounds at least my clothes would fit a bit looser.  No chance.  Like most women, my body has decided that I will never again see my highschool weight even if I end up on a deserted island without a single morsel of food for an entire year.

Speaking of being a woman, I did notice something interesting last night.  For the next 8 months, Adam will now have to carry a somewhat large bag of fluid with him at all times.  He will need to drink tons of extra water due to the extremely high sodium level of the medication.  That means he will need to urinate constantly, including several trips to the bathroom during the night.  The most common side effects of the antineoplastons is extreme fatigue, depression/moodiness, and occasionally nausea and loss of appetite.  That's right ladies... for the next 8 months, Adam will be PREGNANT.  Bwah-hah-hah-hah-haaaaaaaaaaaaaaaa!

The Catheter

The catheter is in!  We were picked up this morning by the driver at 11:45, and brought to the Houston Imaging Center downtown.  After filling out a form, and waiting maybe 20 minutes, they brought us back to prep Adam for his procedure.  Fatima, Adam's nurse, was wonderful.  She got Adam hooked into an IV and told us about how they insert the catheter, and what it will look like and how to care for it.  Then she took Adam back to the operating room. The insertion took about 20 minutes, and the doctor came out afterwords to tell me that Adam did great.  In fact, Adam and the doctor talked non-stop about Norwegian football (soccer), SAD, and living in Scandinavia.  Apparently, the surgeon being of Norwegian decent decided to live in Norway for a few years when he was younger.  I can totally relate to that!  However, what I still can't understand, even after 9 years of marriage, is how my husband is able to extract the life-stories of everyone he comes into contact with.  It's unbelievable.  Never have I met anyone who has such a genuine interest in complete strangers and will happily strike up conversations with any random person who crosses his path.  Me, I just can't do it.  I can't even fake it.  I'm somewhat shy around people I don't know, and I'm sorry to admit that I just can't get excited about the details of everyone else's lives.  Myself?  Yeah, I'll happily talk about myself until your ears fall off, but I'm so bad at asking about other people.  Don't get me wrong.  I think about friends and family often, and worry about them too.  But, I wish I were more like my husband.  It's definitely a gift.  And Calum definitely inherited that from him, thank goodness!  I think Ali will be a bit more self-involved like his Mum.  Then again, Ali absolutely has to say "hello" to anyone and everyone when we are out.  So, nope, he's just like Daddy, too.  Good lads, taking after Dad.  Mummy's got a bit of self-improving to do.

Researching the treatment

Adam's approved!!!!!  Tomorrow morning Adam has an appointment at a Houston clinic to have his catheter fitted, then Friday he gets hooked up to the antineoplastons.  Lord, I never thought this day would come.  We've learned a bit more about the treatment, thanks to some YouTube posts by a couple in England.  Hannah and her boyfriend Pete just left the clinic a couple of weeks before we arrived.  Hannah has a very similar brain tumor to Adam and is on the same treatment.  Thanks to their video blogs, we've been able to see what the catheter/tubing/pump/bag combination looks like and a bit more about how it works.  We've also found more blogs online of other patients who are receiving the treatment, and have a much clearer idea of how it works and what can go wrong.  I didn't realize that you can develop infections at the port-site and that the port can break.  It is plastic afterall.  Also, we've been told that Adam's sodium intake has to be meticulously watched, and his fluid intake and excretion carefully monitored.  I've been told, "If you can't wake him up in the morming, get him straight to the hospital."  Fluid can accumulate in the body or brain and cause complications.  I guess I'm glad we're learning all this, as I suppose I was a bit naive before.  I just thought catheter goes in, hook up pump, and all's good for 8 months!  I'm also going to receive 2 weeks of training, learning how to take blood (every other day), change medicine bags (twice a day), program the pump (also twice a day), and change dressings (every other day).  It's going to be a lot of work, but it's safe to say it will totally be worth it.  Please pray that all goes well tomorrow.  Adam is a bit nervous about the procedure.  I don't blame him!

Waiting

Fingers drumming on table.... waiting to hear from the FDA.  Hopefully, Adam will get his approval Monday.  Then, catheter insertion on Tuesday, with treatment starting on Wednesday.  I'll keep you posted!  Until then, we'll just be hanging out, missing the kids.

The Healer in Adam's Heart

Today was a nice relaxing day.  We went shopping without the children for the first time in 8 years.  We strolled around Ikea for a couple of hours and had lunch.  Then we went to Kohl's to use the gift cards we received from my father for Christmas.  What a luxury to hunt through clearance racks and leisurely try on clothes!

We also had a meeting with Dr. Szymkowski at the clinic.  Now that Adam is being considered for the antineoplaston treatment, we are back upstairs on the 4th floor with "Dr. Barbara", as they all call her.  Except everyone is Polish there, so they say "Duk-toor Bada-bada."  I absolutely love foreign accents... is it any wonder that I married an Englishman?

She went over all the details of the antineoplaston treatment and possible side effects.  They are nothing compared to the cancer drugs we had been asked to consider before.  These are definitely more benign... things like possible fatigue, mood swings, joint aches, etc.  We did learn something very interesting about the new treatment, however.  Adam will need to have a catheter inserted directly into the atrium of his heart for the next 8 months while he is receiving the treatment.  The healing agent will actually be delivered directly into his heart.  We couldn't ignore the incredible coincidence that the song we chose to name this blog after now describes perfectly what he will be experiencing.  Who knew?

We actually didn't choose this title initially.  We both love a Scottish band called Runrig, and were going through their albums looking for good song titles that we could use.  But, everytime we checked Blogger, the blog name already existed.  We tried at least 7 or 8 song titles before we came across "Healer in your Heart."  I'd actually never heard the song, as it was from one of their earlier albums, but as soon as Adam played it for me, we both knew it would be a great title for the blog.  And as luck would have it, no one before us has thought to create a blog with the same name.  Since then, the song has become a sort of anthem for us, and we listen to it constantly.  Now it symbolizes yet another confirmation from above that we are on the right track.  Oh, and I totally forgot to mention it before... on the first day we arrived at the clinic, we pulled into the parking lot.  We crept around slowly trying to find a spot, when we saw one just ahead of us on the right.  We pulled in and found ourselves right across from a Chevy HHR.

Shocking News

So, now that we had decided not to proceed with the drug treatment, we were feeling really positive and excited.  What a relief that we didn't need to find such an astronomical amount of money for Adam's cancer treatment.  We were going to return to the Burzynski clinic with confidence, and ask the doctor to create an alternative protocol.  But, first we had Adam's MRI appointment.  Just a technicality really, since it's so unlikely that a brain tumor could grow back in less than 6 weeks after surgery.  Especially with all the changes we had made.  Impeccable diet, all the right supplements, no cell phone or cordless phone use, daily exercise, and a new low-stress attitiude toward life.  The MRI appointment went off without a hitch.  We went out to lunch and then returned to the clinic.

We were immediately ushered into the financial counselor's office again.  She asked us if we were prepared to pay the treatment deposit, and if we had filled out all the financial aid forms.  We gleefully said that we hadn't filled out the forms because we had decided not to take synthetic drugs as part of the treatment.  She just stared blankly at us for a few seconds.  Adam looked at me, so I explained to her that perhaps it would make sense for us to meet with the doctor again and find out if he would be able to work with us considering our strong views against the medications.  It seemed pointless to pay the $10,000 deposit only to find out that the doctor will not treat Adam without the synthetic drugs.  So, the financial counselor got the doctor on the phone.  Adam had a new doctor now since yesterday, so it wasn't Dr. Szymkowski this time.  Adam spoke to Dr. Sano briefly, then asked if he could pass the phone onto me, since I had done the research and knew a bit more about the side effects we were concerned about.  Dr. Sano was very nice, and said she would certainly repect our wishes.  However, since they found lesions in Adam's brain this morning, it looks like the cancer may have returned and therefore the drugs would really be necessary.  I nearly dropped the phone.  Lesions?  Already??!!  It just wasn't posssible.  The doctor explained that due to the change in circumstance, she would need to meet with Dr. Burzynski and discuss what he wants to do next, and she asked us to go to the waiting room where she could talk to us face-to-face.

It's funny, but earlier in the day, Adam and I were talking about the MRI.  He was looking forward to a clear result to confirm that we had been doing the right things.  I said to him, "If there is anything there, it's because God put it there.  There is no way a tumor could grow back so fast.  And if He puts it there, it will be for a very good reason."  But, when I said it, neither of us conceived that it could be possible.  And when the doctor said that they had found lesions, that conversation flew right out of my memory.  How?  Why?  How could there be lesions?  And she said "lesions", not "lesion".  So there's more than one.  Why?  Why?  Why?  Why is this happening?

Dr. Sano came out straight away.  I loved her the instant she sat down.  She is Asian of some sort, Indian, maybe.  Petite, soft-spoken, and just lovely.  She said that Dr. Burzynski was out of the office, so she couldn't talk to him yet.   But, the radiologist was having a second look at the MRI from the morning, and comparing it to the post-op MRI.  She wanted to know exactly where we stood financially and what we wanted to do about the medications, so she could tell the doctor exactly where we stood.  And we were totally honest with her.  We can't afford the meds.  We just can't do it.  She told us that it was now possible that Dr. Burzynski might want to put Adam in the clinical trial.  Now he had a "persistant" tumor, and there was something measurable.  If he was given permission by the FDA to receive the antineoplaston treatment, now there was material they could measure and watch it shrink.  This is essential to be considered for the trial.  I looked behind the desk at the giant photo on the wall.  Pope John Paul II was shaking hands with Dr. Burzynski.  The same Pope John Paul II that blessed Adam's head as a child.  The same Pope John Paul II we had been praying to day after day after day since this started.

We went back to the condo and prayed.  We walked to the grocery store, and tried to focus on buying something for dinner.  Neither of us was particularly hungry, and Adam was starting to feel achy and feverish.  The phone rang, and it was Dr. Sano.  Dr. Burzynski is putting Adam forward for the trial.  He is going to receive the antineoplaston therapy.  The therapy we have read about from the beginning.  The real reason we came here.  She doesn't know anything about the financials, which we'll have to work out with the counselor tomorrow.  We have no idea how much it's going to cost, but I know with every fiber of my being that THIS is what Adam came here for.  The small lesions were put there for a reason.  And a small silver lining:  they were there in the first post-op MRI.  The doctor didn't get it all out.  Invisible to the naked eye, but when zoomed 5 times on the MRI, they are visible.  They didn't grow back after the surgery... they have been there all along.  And they haven't changed in 6 weeks, so we HAVE been doing the right thing.  We have been able to manage Adam's cancer with diet and supplements.  Now we just have to kill the sucker once and for all.

The Burzynski Clinic

The past two days have been hectic and draining.  We had our first day at the clinic yesterday.  It started with a brief overview of the possible treatments with a coordinator, a check-up with a nurse, then a consultation with one of the doctors.  Dr. Szymkowski met with us to discuss Adam's medical history and confirm the details of his brain cancer.  She also briefed us on the two possible approaches that Dr. Burzynski would take in Adam's case.  The first case scenario is his patented antineoplaston therapy.  To qualify for that therapy, you have to apply to the FDA for special permission, and show that the cancer is "persistant" after using traditional therapy.  Well, we assumed that this approach would not be appropriate, simply because the tumor has been removed and hasn't had time to become what could be considered "persistant".  We then got to meet the man himself!  The meeting lasted less than 10 minutes.  He briefly explained that he would most likely be using a "gene targeted" approach to treat Adam's cancer.  This means that they have tested the tumor sample against different medications, and will prescribe only those which have demonstrated effectiveness in testing.  Sounds good.  One of the medications is sodium phenylbutyrate, which is one of Dr. Burzynkski's signature medications.  We were definitely excited about that one, because obviously we can only get that here.  After being shuffled around a bit more, we were then sent to the financial coordinator.  She showed us the fee chart that we had already received in our information packet.  So, no surprises there.  But... then she starts lising the medications that Dr. Burzynski has prescribed for Adam, which are not included in the treatment costs.  Sprycel... $8,314.80.  Votrient... $3,098.40.  Avastin... anywhere from $2,000 to $6,000 per infusion.  This is per month.  Yep.  Oh, there's more.  Temodar can cost up to $7,000.  Per month.  Add it all up and we're talking about $25,000 per month for prescriptions.  It felt like my heart had fallen through the floor.  It was totally unexpected.  Yeah, we knew Adam would be put on some prescription drugs, but we assumed we were looking at hundreds, not tens of thousands of dollars.  We told her there was just no way we could proceed with treatment.  She made a few calls, and gave us a stack of financial aid forms for the different drug companies.  But we left feeling totally deflated.

At home we started talking.  I did some online research into the drugs, and really didn't like what I was reading.  Side effects like "severe or like-threatening liver damage", and "may cause you to develop a hole in the wall of your stomach or intestine".  My favorite one was, "may cause abnormal passage in the body".  Abnormal passage?  So, not only would we have to spend $25,000 a month for the drugs, but Adam might develop a whole host of other problems as a result.  I know that these side effects don't affect everybody, but as my sister pointed out, Adam has had 2 cancer diagnoses before the age of 37.  He does tend to be in the minority.  We also discovered something else.  He's already taking most of these drugs in herbal form.  Green tea extract, turmeric, and milk thistle all have the same anti-angiogenic properties as these synthetic versions.  And they each cost us about $15-20 per month.  In one study, mice with stomach cancer were given green tea extract (ECGC), and the results demonstrated that ECGC reduced the tumor mass by 60%. The authors of the study concluded that ECGC is a "promising candidate for antiangiongenic treatment of gastric cancer".  If you read the information given on the drug websites, they actually point out that these expensive synthetic drugs have not been proven to extend life or to reduce mortality of any cancers.  So, now we are scratching our heads wondering, why on earth is this guy prescribing this stuff to Adam?  Well, Adam decided he's having none of it.  No drugs.  We can't afford it, and he refuses to put that rubbish in his body.

I would love to write more about what happened today, but my fingers are cramping up on this dang laptop keyboard.  I'll continue tomorrow morning...

The Drive From Hell

We made it.  We drove the first leg to Atlanta on Saturday, which was quite straightforward and uneventful.  Oh, except for the part where Adam tried to kill us.  We were in the middle lane, and a tractor-trailer was next to us in the right lane.  The right lane was ending, which I picked up on, but Adam didn't.  I told Adam that the truck needed to come over, so Adam started speeding up and looking into the lefthand lane for an opening to merge over.   The truck chose that same moment to speed up and come over in front of us.  Except, he wasn't exactly in front of us.  I started screaming bloody murder, which shocked Adam into yanking his foot off the pedal.  I still don't know how that truck missed us.  Our hood was literally under the back left corner of the truck.  We rode in silence for quite a while after that one.

Funny thing is, that near miss really helped me.  Up until that point, I kept having these awful thoughts that we were going to die on the way to Houston.  On every bridge, I waited in tense anticipation for Adam to lose control of the car, so we could skid off the side of the bridge cartoon-like to a certain watery death.  You know, like when the car is actually suspended in mid-air for a full second before dropping straight down... just a cloud of dust floating where the car once was.  But, after that near-accident, I felt so comforted.  If we were meant to die and leave the children parentless, it would have happened then.  And it didn't.  I think God knew I needed some help, so he sent an entourage of guardian drivers to give me strength.  Seriously.  We have rented a Chevy HHR for the trip, and I'm telling you, we have seen hundrends of them all along the way.  I seriously doubt this car is the most popular car ever sold in the U.S.  At least once every half-hour one would pass us.  At every single gas station, fast-food restaurant and rest stop, there would be one somewhere in the parking lot.  I imagined each one was like a heavenly secret-service agent protecting us on our trip.  It was awesome!

Final note...  I really wish someone would have told me that we would have to cross about 10,000 bridges and fly-overs between Atlanta and Houston.  I hate bridges.   Hate hate hate hate hate hate bridges.  They absolutely terrify me.  Especially in the dark.  One of  the worst moments was on the bridge over Lake Charles.  There was contruction going on, bollards everywhere, lanes ending, cars swerving in and out.  I have never been so petrified in all my life.  We pulled over after we had gotten past all the madness and could hardly speak.  Awful awful awful. Where the heck our God-sent HHR chaperone was I don't know.  It looks like we have no choice but to send for the children and relocate permanently to Houston.  I'm not sure we will emotionally survive the drive back.

Counting Down

A few days to go before we drive to Houston, and I'm so overwhelmed with what we need to do before we go.  I haven't packed for travel in over a year, and I have no idea what to bring.  Not to mention supplements and vitamins, powders, liquids, a big-honkin' juicer, mini-blender for the Budwig mixture (trust me, you don't want to know), and I'm supposed to be making soups and salads ahead of time for the journey.  I'm currently gently placing my head in the sand and ignoring the situation. 

My in-laws arrived on Monday, and are getting used to the schedules and routines of the house.  I need to create a chart for Ali's supplements, which is a project in and of itself.  Man, we must be the most high-maintainance family in the world (my sister and parents are silently nodding their heads in unison).  Gluten-free, dairy-free, sugar-free, very little red meat, low-starch, etc.  And I'm thinking of trying soy-free, as my migraines have been horrendous since we started eating loads of stir-fries (soy sauce), tofu and edamame.  Because I need something else to cut out.

So what do we eat, you ask?  Well, sushi night was a rousing success with the kids (who would have thought?), and we have been doing lots of stir-fried veggies and sea-food.  We had cassoulet the other night with green beans, salad, and mixed vegetables.  LOVE cassoulet!  Tonight will be pork chops in my dairy/gluten-free mushroom white sauce, with brown rice, salad, and probably another vegetable.  Tomorrow night will be broiled salmon, broccoli, roasted red potatoes (just a couple), and salad.  Lunch is always some sort of vegetable soup, and a salad.  Today my mother-in-law made a Tuscan bean soup that was lovely.  Yesterday was broccoli soup, and I have butternut squash soup and potato/cauliflower/squash soup planned for the end of the week.  I'm amazed at how our taste buds have changed since we cut out sugar entirely.  And the kids!!  They are eating things I never imagined possible, all because they are appreciating "adult" foods now.  They haven't had a sip of juice in weeks, and happily drink water with meals.  Ali is my salad connisseur, and insists on dijon mustard on absolutely everything!  And they happily wolf down my low-sugar coconut ice cream.  I'm telling you, it's awesome.  So we are definitely not suffering over here!

I will probably be posting next from Houston!

Vanessa

P.S.  Thank you so very much from the bottom of both our hearts for the donations that have been made.  I apologize for not thanking each of you directly, but please know that our hearts are bursting with gratitude.  Your support and generosity is truly amazing :)