Short intro about the blog

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

Saturday, May 12, 2012

Disappointing news

Well, here we are, 8 weeks since the last MRI scan.  We had really high hopes.  Adam has been doing amazingly well.  He feels relatively good.  He hasn't missed a dose.  He's been keeping to our new super-healthy way of life.  Perfect diet, all the appropriate supplements, going to bed early, working shorter days, no cell or cordless phone... he hasn't slipped an inch.  I haven't either.  I dutifully make him three healthy made-from-scratch meals everyday.  I run freshly made vegetable juices, whey protein shakes, nuts and low-sodium cheese up to him in his office all day long.  He's been drinking 8 liters of water every single day, which I filter for him every morning (it takes over 20 minutes).  And we've been praying.  Oh, how we've prayed.  We really expected a good result on Thursday's MRI.  We felt it.  We knew it.  This tumor is history.  We were preparing ourselves to start the countdown.  You see, once the tumor is completely gone, then Adam only has 8 more months of treatment.  He's fed up.  I'm exhausted.  We need this to be over, or we both might go insane.

I guess God has other plans.  The MRI showed that the tumor that had shrunk by 40% 8 weeks ago, has now increased in size by 20%.  There is also another lesion that has remained unchanged.  It's all a bit confusing, as there are two balls of active tumor, but since they came from the original tumor that Adam had removed, I guess some still consider that "one" tumor.  We didn't quite understand that from the last two scans.  Now we understand that there are actually two lesions we are dealing with, one of which has remained unchanged throughout the 12 weeks of treatment.  The other one showed a good response on the first scan, but has now started fighting back and is growing again.  I suppose it's good news overall.  The tumor seems to be affected by the treatment, but apparently this dosage level just isn't going to cut it.  So, Dr. Barbara has decided to increase Adam up to the maximum dosage.  To put it bluntly, this sucks.  It sucks on so many levels.  Adam has been sailing along with no side effects up to this point.  He would now be facing nearly double the dosage, which could start causing him problems.  Most likely, he will begin to experience build-up of fluid in the brain leading to intracranial pressure.  This would require him to be on a steroid to control the swelling.  Also, he is already drinking 8 liters of water a day.  At such a high dosage, he will most certainly need to drink a lot more.  His urinary system is struggling to handle the amount of fluid, and he has developed a severe incontinence problem.  It makes it extremely difficult to go anywhere, even with the aid of incontinence pads.  It will probably get much worse once he is forced to increase his fluid intake.  And the interruptions in the night will be more frequent.  He's already very sleep-deprived, and is struggling to work as it is.  He may not be able to continue working, which is something I can't even fathom right now.  Having no income will definitely be a major problem.

Because Adam's blood work had become so consistant, we had been able to draw and deliver blood only twice a week.  Now that will be bumped up to three runs a week again.  We haven't even received our first invoice from the hospital for the last two months of bloodwork.  I shudder at the thought of how high our tab is getting at the diagnostic center.  Also, our schedule is going to change.  This terrifies me.  The past two months have been grueling, but we've been managing.  We rely on an awful lot of people for help, and without them I would have crumbled by now.  I feel like I've reached the point where I am doing the most I can possibly do.  But, now with the dosage increase I will now have to prep and change bags three times a day instead of two.  I was playing around with our schedule yesterday, and it is going to be incredibly hard.  Adam will need to come off at 6:30am.  I will have to draw blood at 8:00am, and have him hooked back up immediately to start infusing as close to 8:00 as possible.  He will need to be disconnected again at 2:30pm, which means I will be unable to take the kids out in the afternoon.  Forget soccer, no playgroup, no park.  Then the third change will be at 10:30pm.  He won't stop his evening infusion before 10:30, so I'll have to stay awake so I can disconnect him then.  Then it'll take me about a half-hour to prep and reconnect him, which he can be asleep for.  But, I won't be able to go to bed before 11:00pm, which is really pushing it for me.  Especially since I'll have to be up and at 'em before 6:30am to start the process all over again.  It's going to be extremely challenging and I'm not looking forward to a year of this new schedule.

A friend wrote in an email recently that many people believe that God never gives us more than we can handle.  This is our cross, but by that thinking, it's a cross that Adam and I should be able to bear.  But, that isn't exactly true.  What about Jesus's own cross?  He couldn't handle it.  He fell three times trying to carry it, and He was unable to do so.  Without Simon of Cyrene's help, He would not have gotten that cross up the hill to Calvary.  God does in fact give us crosses we can't bear.  I can't understand why, but I don't understand most of what God does.  That's what makes him so amazing.

1 comment:

  1. Vanessa! So many prayers for you and Adam and the kids. You're right, Jesus had Simon and He did fall 3 times. That tells us that its OK to feel like you cant do it. Its ok to feel down and out and done! Its Ok to feel like you cant go any further or do any more. Because Christ's Passion also teaches us that when we feel like that He will send us Simons. I have learned that life is like the Paschal Mystery. We have the certainty of our own Easters as we travel the Way of the Cross. I hope and pray that your "Easter" comes soon - that the tumor responds quickly to the dosage and that John Paul II will intercede for Adam's healing and protect him from the side effects of the increase. Sending you love and prayers and a great big hug!