Short intro about the blog

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

Tuesday, February 21, 2012

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.


  1. We will step up the prayers! You are going to have your up and down days, be kind to yourself! its a marathon, not a sprint. Sending hugs and prayers.

  2. if someone had told you what you'd have to do just as a "Mother"....back in'd of blown someone's brains out....and look how well you glide through that. I would think this treatment will become as natural as breathing..but get MAD...get FRUSTRATED...get have every reason to be all those shame in that...we pray to Christ...we aren't Christ :) Love you guys...This too shall pass....