Security?!?

I have been falling behind on my blogging duties!  We did finally make it to Josh's bone marrow test last week!  If you remember we had a mess trying to get it scheduled, but finally we were healthy enough to go.

It was kind of a fiasco - there was a moment where an employee actually used the phrase "Do I need to call security?" Yeah, that kind of day.  If you know Josh and me then you know we're rule followers.  There's not much that makes Josh angrier than people who try to bend the rules cause they don't want to put the effort forth to do it the right way.  Well, before you get sedated for a bone marrow test they tell you not to eat or drink after midnight the night before.  Technically I guess, nobody told us that.  When you look at your appointment online there is a link that says "click here for special instructions".  So we read them and knew that he shouldn't eat or drink.  Well, there is also a line that says:

You may take your other medications as you normally do, but only with small sips of water to swallow
your medications.

Simple enough, right?  The first time we had this done we didn't believe it and he did not take his meds.  So then in the operating room minutes before he was put under they told him, ohhhh, go ahead and take it.  So he drank a mouthful of water with pills.  So this time we were trying to keep him on a good schedule as far as timing of the chemo so he went ahead and took his pills with a sip of water.

So we get upstairs and are filling out the forms in the anesthesia services center.  It asks if you ate or drank and he said no.  And then it asks if you took your scheduled medication.  Josh circled yes.  And then it asks you how much water did you drink with it.  And then there is a blank line to write the answer on.  So Josh looks at me and asks what he should put there.  I'm all, "ummmm, a swallow?" Well Josh thought he should be more accurate in his guess.  So he wrote the amount 1.5 ounces.  A complete RANDOM guess of how much water it takes to swallow two large pills.  No big deal, right?

Well next thing we know they call him up there and tell him they can't do the surgery cause he drank water.  We explained that the form THEY provide us says to take your meds.  And that last time he took them while standing outside the operating room.  They told us the problem wasn't that he took them, it was cause he drank too much water.  We explained that it was a tiny regular swallow of water and because the form didn't specifically state what kind of answer they wanted we guessed and wrote ounces.  So I told them to just give me the form back and I will change it to whatever they needed us to say.  WELL, they wouldn't let us see the form again.  And that's when things got ugly.  I was FURIOUS!!  It took everything I had in me not to yell.

Josh just about choked down those nasty pills with the tiniest amount of water possible, and because I did not know their secret code word "swallow" we were going to be delayed by hours.  We just about moved mountains to get us there while the doctor was in, while we weren't sick, while Josh wasn't working.  On top of that my mom took off work to watch the kids and Wyatt was still sick and was puking that morning without his mommy.  ALL we wanted to do was get out of there and get home.

SO I talk to the lady at the front desk and tell her it would be super polite and helpful to let people know that if they took their medication the write term they are looking for is how many "swallows" of water you had.  If that is what they wanted they should have written a little blank like this:

 ______________ swallows

Easy enough, right?  Nope.  They said they can't tell people what to write on the form.  So I ask her if a gulp would have been too much.  A sip?  A teaspoon?  Hmmm.  Nobody knows the answers to these questions.  Isn't this the most absurd thing ever?

I mean, people who are there getting this done are going through HELL.  No matter what cancer it is, how old the person is, or whatever - you can pretty much guarantee that this is the worst time of their life.  To have to deal with such stupidity is just absurd.  They should really be more professional than this.

And the problem was this one woman - she was HORRIBLE.  Just so condescending and rude.  She even has the nerve to claim that they didn't tell us to take the medicine and that the anesthesia people are separate from MD Anderson.  So we walk away and the woman started talking about me with another customer.  That was when Josh lost it.  He got up and literally yelled at the woman.  That was when she asked if she needed to call security.  I was happy my man stood up for me, though!  :)  I went and talked to the patient advocacy people and they were pretty outraged about the whole situation.

The instructions to take you medicine should be removed.  AND the people who work in that office should know what information if being mailed to patients.  AND the form you fill out should give a clear expectation of what they are looking for.  I felt like I was playing a game of Password and they want you to guess what the secret word is to describe the amount of water in one swallow.  So ridiculous!

So we sat for hours pushing our doctors appointment late resulting in us not getting home till late in the day.  It was really maddening.  We only met with the doc for a few minutes, but he told us that he thought Josh's three month BMA results were "outstanding."  So that was exciting to hear.  Of course we won't know about this next round of tests for a couple more weeks.  Praying for good results!

We have already started getting funds deposited into our Amazon account from people shopping through our link, so THANK YOU!!  Every penny makes a difference for us.  Josh went to the Light the Night walk so I will have him write about it later this week!

Thanks for listening to my ramblings about our horrible MD Anderson day!  I know it was something REALLY not important in the scheme of things, but it was important to us at the time! Here's a pic of Josh with Noah after he taught him how to ride his bike without training wheels.  So thankful he was here to do it!

Getting ready!!

So tomorrow is the big day!!!  Our first appointment is bright and early at 6:15!  Seriously already feel like crying just thinking about getting up early enough to get there on time!

Josh has a blood draw, bone marrow aspiration w/sedation, EKG, and a visit with the doctor.  So I'm fairly certain that will take ALL day, even though we are starting at the crack of dawn.

Hopefully he will get another prescription filled while we are there to restock his meds.  It is so strange to me but you have to keep the bottles for the trial and return them to the trial nurse.  Isn't that weird?  I snapped a pic of Josh's before we packed them up to go.  It is crazy to think that those few bottles of pills are what is keeping him alive!

And check out this other part - I think it is so funny that they treat it as though it is so very dangerous and you must dispose of properly.  So glad Josh is swallowing four of these daily! ;)  If we walk out with another bag of pills I will once again feel like we are stealing - I am still so amazed that they are giving them to us for free! 





And this is what the pills actually look like.  The NVR is for Novaris, the manufacturer.  And TKI is for tyrosine kinase inhibitor - the class of drug that Tasigna is. 






And the last thing we are returning is his medication diary, where he has recorded the time of every single pill he has taken over the last three months.  We keep it conveniently attached to the fridge!

Josh just got out of the shower since he won't be able to bathe for 2 days after his BMA and we're packing up the bag for the hospital right now.  We're feeling quite anxious about tomorrow - Josh mostly for the bone marrow test itself, and me mostly for the outcome.  We never got the situation with the nurses worked out about when we will get the results, so we're not even certain we will have anything to report tomorrow at all.  Josh's job allowed him to take a vacation day Thursday night, so we are pleased with that.  He didn't want to have to sit up in an uncomfortable chair all night with the pain he will have in his back from the tests.  That also allows us to meet with the doctors again on Friday if need be.

It seems that the way that they measure your success with the meds is through a test called a PCR.  If I am reading his test results correctly from the first test, he had 91.43% as his PCR results.  The goal is to get as close to 0% as possible.  Want to see why we are a bit confused?  Here is a copy of just the top quarter of this test result page....

REAL TIME BCR INTERP PB                          
BCR-ABL qRT-PCR:

Coexpression of b3a2 and b2a2 BCR-ABL fusion transcripts is detected by
real-time PCR.

The percentage of BCR-ABL to ABL transcripts is 91.43.

COMMENT: Quantitative real-time PCR analysis performed on RNA from this
sample for the BCR-ABL fusion transcript resulting from the t(9;22) in
leukemia. BCR-ABL and ABL transcript levels are detected simultaneously
and quantitative results expressed as the ratio of BCR-ABL to ABL levels.
This ratio may vary up to one-log because of methodological reasons.  As
of 8/2/07, the assay has shifted to a new platform.

And the font is half as large as the one here, and then there are about 40 more pages of test results from that same day.  See why we are confused?  I will be glad to see the doctor tomorrow and get to talk to someone about all this!

We'll post again tomorrow night after we have time to process everything that happens tomorrows.  Prayers are appreciated - especially for Josh to be calm for his procedure.  Thanks guys!

An unexpected visit!

So today ended up being an MDACC day!   Last week when Josh was feeling so bad we really weren't sure who to talk to about coming in.  So we emailed 2 different people in 2 different departments.  The trial nurse got back to us immediately and set up an appointment right after we talked to her. So we thought that was that.  Well days later we get an email from Dr. Quintas' nurse who also told us she set up labwork for us today.  So Joshua was supposed to cancel today's appointment.

But he came home yesterday morning and said that he had been very aware of his spleen again all night at work.  It's not painful, but he says it is just that he can feel it inside his body.  So he wanted to go ahead and go in today.

So we did, and everything came back normal!  Well, not everything entirely, but all the important stuff.  I am waiting for the day when his lab work printout doesn't have a single line in bold! :)  Almost there!  They also said that his thyroid numbers from last week were normal too.

His main problems this week have been with muscle pain and cramps in his legs and occasionally in his shoulders.  The nurse told him to drink tonic water and he can take some calcium supplements cause his was at the low end of normal.  Evidently those things help with muscle cramps.  Of course the active ingredient in tonic water that helps with the cramps is quinine, which in itself can be bad for you.  We bought a bottle today so I guess we'll discuss if he wants to drink it.  I mean, he's already dealing with leukemia the last thing he needs to have to deal with low platelets, right?  Perhaps we'll start with calcium. :)

While we were waiting in line to pay for parking Josh declares that he thinks he just needs to calm down about all these things he's feeling.  He just feels "something" all the time.  Fatigue, muscle cramps, bone pain, whatever.  He's realizing that it is time to learn to live with these symptoms, cause they will be here forever.  Up until now each little thing has made him think that the chemo isn't working and things are going downhill.  But these things are just normal for someone with Chronic Myelogenous Leukemia.  Normal for people taking Tasigna.  He's trying to acclimate to this new normal. 

Every time we are at the Fast Track Lab we do realize how very blessed we are.  So many very, very sick people.  So many people with acute leukemias.  So many people having a really difficult time with treatment.  Thanking God today that he is doing so well!