Short intro about the blog

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

Monday, June 11, 2012

Two Tumultuous Weeks

It all started on a Friday afternoon.  The clinic had been trying to reach us and had left two messages, but I was out and didn’t check the voicemail when I got home.  At 6:20pm we got another call, and this time we were all home and Adam answered.  It was someone from the clinic… we never found out exactly who.  A doctor’s assistant.  She explained that Adam’s chloride levels had been steadily decreasing over the past week, and they had reached quite a low level according to that day’s bloodwork.   She had already consulted with the oncologist at the clinic, and they agreed that Adam should go off treatment and receive some IV fluids to try to correct the imbalance.  It being Friday after hours, we would really have no choice but to go to the ER.  The woman explained that she was sorry we needed to do this, but it was important that we get the fluids as soon as possible, and have another bloodtest done to ensure his levels were back up.  We arranged for the kids to spend the night at a friend’s house (their first sleepover at a non-family member!) and we went.  We got to the ER around 9:00pm, and you know how those things go.  We finally got into the back after over an hour’s wait, and then it took ages to actually get someone to hook up the IV bag.  The drip lasted over an hour.  Then we had to wait for bloodwork.  Adam meanwhile missed his 8:00pm infusion, then his 12:00am infusion.  We were both beyond exhausted.  Finally we got the news that his chloride was back up and we could go.  We got home, hooked Adam back up to his pump, and crawled into bed around 3:30am.  It was so hard setting that alarm for 6:00am!  I did actually get up, and managed to disconnect Adam, flush his catheter, prep his bags, program the pump, and reconnect whilst in a state of zombified bleariness.  I collapsed back into bed, and we both slept until 11:00am.  My first lie-in in four months!!  The rest of Saturday was a blur.  It was like the worst jet-lag ever.  We spoke to our chiropractor, who suggested that perhaps the flagging chloride levels were due to over-hydration, and we agreed.  So, the rest of the weekend we were going to make sure Adam didn’t drink too much water, because we were NOT going back to the emergency room again.  Sunday was really disorganized and chaotic as we both tried to function.  Just one late night was enough to really mess the both of us up for two days.  Monday we finally seemed to get back to normal, but Adam was starting to feel a bit thirsty.  In an attempt to quench his thirst without guzzling water, he spent the evening watching bottled water advertisements on YouTube.  Now, keep in mind he was still drinking obscene amounts of water.  We just cut back a little (which we thought was the right thing to do), and he was taking in 10 liters a day instead of his previous 12.  What made things really frustrating was the stupid three-day holiday weekend.  Adam really needed to have bloodwork done on Monday, but being Memorial Day, everything was closed.  By the time we got bloodwork on Tuesday, things were not good.  We got a call from the clinic (our normal nurse, thank God), and she told us that Adam’s sodium levels were sky-high.  Adam was feeling really sluggish, which was a telltale sign.  She explained that if we didn’t get Adam off his medication immediately, he could slip into a coma.  Holy cow.  When she asked what happened, I shared the story of our nightmarish weekend.  She told me that if Dr. Barbara had been in the office on Friday, she would NEVER have told Adam to go the ER for something as insignificant as low chloride levels.  “Low chloride we can live with,” she said, “But not high sodium.”  So Adam was advised to get back up to 12 liters of water a day because that had been working so well for him.  The bad news was that he would have to come off his medication for a full 24 hours!  So he had already missed 2 infusions on the Friday night, and now on Tuesday we would be missing 6 more.  I was so frustrated.  However, there was a silver lining.  NOT having to change bags for 24 hours was like a luxury vacation.  Adam slept really well, and only woke up once or twice to pee.  And he wasn’t plugged into the wall, so he could actually use the toilet!  Hurray!  We both caught up on much-needed sleep, and enjoyed the mini-break, trying not to think about how the lack of medication might be affecting his cancer recovery.

The rest of the week went by relatively quick.  Just the usual intensely-scheduled daily routine.  Now with three bag changes a day, things are so tightly packed in.  I don’t sit down…. ever.  For some reason (call it PMS) the weekend was a bit difficult.  I just felt a bit overwhelmed and frustrated with the daily pace around here, but I’m powerless to do anything about it.  It is what it is.  Sunday I get a call from my sister.  She has been graciously picking up our dirty laundry on Wednesday mornings, washing-drying-and-folding, then returning them to me either the same day or the following morning.  Well, her business has really picked up, and she’s struggling to fit in her own family’s laundry let alone ours.  So regretfully, she has to stop.  Crap.  Monday was extremely hectic as I had two meetings at the school starting at 8:30am, then grocery shopping and a ton of errands.  I was exhausted by the afternoon.  We have a friend who dutifully comes over on Monday and Friday nights to wash the dishes, clean the kitchen, and mop the floors.  I couldn’t live without her, and I thank God for her every time she comes over.  However, due to her own medical crisis, she was unable to come on Monday night.  Our “hell hour” is usually from around 3:00pm-4:00pm, which is when Finlay wakes up from his nap and screams like he’s on fire for an eternity.  The older boys want snacks, Adam needs a bag change and his protein shake, and I’m trying to start dinner (we eat early around here).  I really struggled to keep it all together that day, but after the boys were bathed and in bed I managed to survive until the end of my day, which didn’t come until after way past 11:00 since I had a kitchen to clean.  Then Tuesday hit like a ton of bricks.  In the morning, the mortgage company called offering us a refinance.  It was a great deal, and I was happy to jump on it.  Too bad it took 4 HOURS of my day to deal with the phone calls, emails, account set-ups, printing problems, scanner failures, and phone messages to make it happen.  The daily “hell hour” nearly killed me, and I ended up a shaking sobbing mess on the floor.  In all the hubbub, I hooked Adam up for his afternoon/evening infusions, but never switched on the pump.  At 10:30pm I go to disconnect him, and discover a totally full medicine bag in his Camelback.  He missed two infusions.  I lost it.  I was up until the wee hours of the morning feeling like I accidentally killed my husband, and sobbing uncontrollably.

Wednesday morning was a blood run, but I didn’t realize that I hadn’t scheduled a runner until I woke up that morning.  Crap.  Now I had to throw the kids in the car and go there myself, but the consolation prize was a morning playdate at one of my favorite people’s house.  I relaxed for a couple of hours and enjoyed myself for the first time in a long time.  But, Wednesday afternoon was hell as usual and I really struggled to make it through with my sanity intact.  Thankfully, three days of awfulness made way for an uneventful remainder of the week, and I’m able to report on the craziness from the comfort of our home, and not under surveillance at a psychiatric institution.  Throughout all of this, Adam has remained and always will be a beacon of positivity.  I hate that he’s the one with the cancer, but he also has to scrape his caregiving wife up off the floor at least once a day.  He feels great on the maximum dose, and continues to run his business and care as much as he can for the kids.  The next MRI is scheduled for the 21st of this month, and we are looking forward to getting it over and done with.  No expectations this time.  But, I think mentally I could really use a positive result!


  1. Oh Vanessa, I breaks my heart to see how hard your life is at the moment. I'll be praying for all of you.

  2. Adam and Vanessa, hang in there! Our daughter Kassidy too is on antineoplaston, she is 16. We also have 3 bag changes a day, I know what you mean about not having much time in between. Its crazy, but we manage. We had our doctor here in town prescribe bags of dextrose (fluids) to give Kass 2 times a week in between treatments. We have noticed that during the summer Kass cannot quench her thirst and the being hot makes it worse. So she tells me when she feels she needs fluids and I hook her up to an IV pole and give her fluids just like at the hospital. I hate going to the hospital just for fluids. It's always a big ordeal. Anyways hope this helps.
    Kassidy's blog is :

    Keep fighting!!!

  3. Hi Vanessa, I have no words. You are such a fighter. Doing everything, as my dad is. I know you suffer more than we do. Why do you have three bag changes? could you explain it to me by private message on fb?
    my next scan is also near the 20th...
    hope for adam!!!
    Celeste Sabagh