Waiting for...

Dear friends & family,

It's been a hard burden to bear, but Shane's cancer journey is nearing its destination.  Since Shane can't blog, I can only offer my perspective as Shane's wife and caregiver.  Life has been difficult since the beginning of the new year: emotionally draining, physically & mentally exhausting.

Shane's pain management unfortunately has side effects. He's currently using a PCA pump, infusing 1.1 mg of hydromorphone per hour. Hydromorphone is a derivative of morphine.  It is an opioid analgesic, in medical terms; a narcotic, in legal terms. Shane suffers from nausea & vomiting, common side effects from opioids.  Another common complication from pain medications is opioid toxicity.  Shane's liver is supposed to break down the medications and his lungs, bowels and kidneys get rid of the waste.  Unfortunately, the cancer in his liver is probably interfering with that; he hasn't had a bowel movement in days; his fluid intake is dependent mostly on IV hydration, which is limited; he vomits whatever he ingests; he has been on long term opioid pain relief, and may have kidney problems.  Thus, the wastes from the pain medication build up in the body.  This is called opioid toxicity. With opioid toxicity, the person has very marked behaviour changes.  Shane started to display signs of delirium or confusion yesterday, in the form of agitation, bad dreams, nightmares (for the past week), drowsiness, confusion,  hallucinations (he told me that he saw a golden retriever sitting and walking about in the room  a couple of days ago), restlessness, reduced concentration and short term memory loss.  The problem is that these symptoms could be Shane's brain tumours affecting his mental faculties.  But I suspect opioid toxicity, because his coordination & balance are not overly affected. Overall, it's sad and distressing to see Shane not be like Shane.  It's probably more scary if you have never encountered these symptoms before and don't know why they are there.

What we'll probably do about it:  1) Continue IV fluids, to keep Shane hydrated.  I'm hoping that Shane's kidneys are still working and can keep flushing the wastes out of the body, thus eliminating the toxicity; 2) Lower the dose of Shane's pain meds.  If Shane's kidneys are not working properly, the doctor may lower the dose of opioid;  3) Might switch opioids. Different opioids make different wastes.  By switching from one to another the body can continue to get rid of the wastes; 4) 24 hour supervision of Shane.  Shane's so confused that he requires someone sitting with him, in order to keep him safe.  Shane was able to handle his IV infusions by himself in the past (changing the infusion rate on the pump, disconnecting his IV line, etc.), but now he confuses his IV lines with his pain pump and other subcutaneous ports.  He's so smart that he could get himself into a whole whack of trouble, considering how much he learned about his own health care.

And that's just one aspect of Shane's complications.  I'm not going into depth with his other symptoms:  swelling in his legs & feet and abdomen (edema), fluid in his lungs (pleural effusion), accelerated heart rate (probably from fluid surrounding his heart (pericardial effusion) - Shane's heart rate is known to get as high as 143 beats/min.  (normal heart rate = 60 - 80 beats/min at rest).

Yeah, the situation is sucky and unfair.  But, we do the best that we can out of life, right?  Our main focus is to keep Shane comfortable at home, surrounded by love and warmth from his family and friends.  Rest assured, Shane is loved and will be loved to the end.