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.

It's been horrible lately...but we're home now.

Hi, everybody.  This is Kaye.  Shane's not up for blogging right now.  And I might have to take over the blog from now on.  Last Friday (Dec.30), Shane started vomiting everything that he was taking in orally.  Unfortunately, that included his pain medications.  No pain meds means no pain control.  And Shane was in a lot of pain.  Because of the holiday weekend (New Year's), we couldn't reach our family doctor to change all of Shane's meds to intravenous or injection.  Shane lasted through 3 days and nights of intense pain, hoping that something would stay down and be absorbed in his system.  But alas, nothing did.  By Monday, the nurse & I decided that Shane needed to be admitted to the emergency department at the Milton District Hospital.  We waited almost 4 hours in the waiting room, before Shane finally could lie down on a stretcher in an examination room.  Shane was hooked up to an IV and was dosed with a total of 7 mg of morphine within a period of 1 1/2 hours.  It was a relief to see the pain go away from Shane. 

Shane was finally discharged from the Milton District Hospital on Thursday with a CAD pump, which is a battery powered portable pump that continuously infuses pain medication through subcutaneous injection (a needle under the skin); it also permits Shane to dose himself with more pain medication for breakthrough pain.  He hasn't eaten/drank anything for the past 8 days without vomiting.  But this afternoon, Shane has been to take a bit of broth and ice chips without vomiting them up, so his digestive system might be able to tolerate something now.  Who knows if he'll get better?  Nobody knows.

Shane is very weak and "not all there".  I can't really say that he's disoriented because he know who he is, and where he is, and what time it is, but I can't ask him questions that require complicated answers.  Life at home has changed dramatically, because of Shane's declining condition.  We had to get him a hospital bed, and we have oxygen if he needs it.  He fades in and out of consciousness, so sometimes it's very difficult to talk to him.  He sometimes perks up and he can walk to the bathroom, but overall, he's been staying in bed.  

Please excuse me for speaking plainly.  Shane's time is limited.  Nobody knows how long he will stay like this, but his condition could deteriorate rapidly.  Especially, since he can't eat or drink much.  If you want to visit Shane at home, now is the time to do it.  He shouldn't be inundated with visitors, but he can tolerate 2-3 people at a time for short visits.

Anyhow, I'll write more later.  Signing off, Kaye.

2011-12-27: Tue CyberKnife treatment 3 of 3 (fail)

This day didn't start well, end well, or get prolonged into the next day well. Though I suppose it finished overall well. 

Note: Thanks very much to all friends, parents and relatives that helped out during these troubled 3 days.

Tuesday, canceled CyberKnife because of two reasons:

• (1) Swelling feet from last Thursday's hydration treatment, this indicated that my liver or kidney was not working or something else bad happened. 
• (2) I was spitting up something dark that could have been bile or blood as of 2 AM that morning. The CyberKnife people convinced to come in to the hospital to be checked out.

What they found out was that I had a heart rate of 143 about 25 to 40 beats higher then they thought was safe.  

I also think that it was during the course of Tues's investigation that it was discovered that I was spitting up blood, but that it was from cutting what may have been a stomach ulcer around 2 am with a sharp rice cracker. The spit up sample had a sample of blood mixed with stomach acid (partially digested).

Wednesday, I received a phone call early in the morning from one of the J.H. doctors. They had booked me for:

• an ultrasound of my legs and 
• a CT scan of my chest. 
• Both were to look for blood clots that may have caused the foot bloating.

Results:

• No clots anywhere to be found. 
• + again, a high heart rate (134 this time)
• + the CT scan showed fluid building up around my heart and around my right lung.

 These results were enough to convince Kaye and I to commit me to the hospital for the night.

Wednesday night - Thursday morning:
Slept and ate at the hospital.

• "Slept" in a quad room with a bunch of very acute care patients requiring help to almost everything including bathing and peeing. So "Sleep" was a relative term.
• Once again (last time my July2010 surgery), since hospital beds are plastic, their pillows are plastic I had a tendency to sweat in them, then have the sweat pool against the plastic resulting in awesome air-conditioning. Which sucks when you're cold. So had to my change clothing a lot.
• Had my 3rd seizure ever while there. Same symptoms as before, right hand starts shaking a little then coming up without control (missing the nurse's button which I was aiming for!) until I electrocute (seize) and black out. Then I wake up and notice an IV injection sight (rip it out bloodily) see a nurse with a flash light whom I recognized doing his nightly hourly rounds and asked him "why am I in the hospital?". I then slowly started to recall everything that lead up to that point and have to explain my seizures to the nurse.
• Received a few blood tests during the day
• Also did a angio cardio gram of my heart. My heart looks normal (Yay!)

Most importantly, the last thing we did at the hospital was to "tap" my back and drain the fluid from beside my lung and heart.

I had Kaye take a photo of it: We withdrew almost a whole litter (think bag of milk!) (actually 750ml) out of my chest. This makes a huge difference in my ability to breath, cough, speak, etc. I went from collapsed lung to expanded lung fast enough that it was more difficult to do all of the above at first before they started to repair themselves.

So that's about it. I'll let Kaye expand on anything I may have missed. I have to admit that "sleeping" was not a highlight of my stay, so I'm quite tired as I write this to answer everyone's questions.

-- Shane

2011-12-23: CyberKnife 2.5 of 3 done.

They've been having problems aligning the tracers to track my breathing.

So, they're going to track one liver tumor at a time and zap them individually in two sessions.

• So Wed was a waste, nothing they did allowed for whole liver tracking. 
• Then, Thu was ok, they did one tumor (that was the 1st half session of what would have been session. So I'm at session 2.5)
• Next Tue will be the 2nd half session of session 3 making a full session 3 completed.

Problem / Side-Effects:

• Definitely extra swelling with the radiation treatment. This means that I'm in a lot more pain due to swelling. So more pain meds and even sometimes that isn't enough as the cause, swelling, still isn't settled. Swelling could take weeks to months to go down (I'm hoping days...) as the tumor has to die and then dead tissue be reclaimed by the body.

I'm looking forwards to the  holidays!

Shane

2011-12-21:

Pain's a bit more after the CyberKnife. Hopefully that means the right target is being hit. Swelling before shrinking as they say. However, the increased pain is more likely due to the next paragraph's topic... coughing...

I figured out the problem with my coughing at night to get stuff out of my lungs; stuff that doesn't exist there during the day. It's called pulmonary aspiration. I'm basically letting stomach contents into my lungs then coughing it back up again (at the expense of liver pain due to coughing pressure/irritation). Aspiration is similar to "it going down the wrong tube". Not a problem for a conscious healthy person. Something that I'm not when I'm asleep.

So I figure I need to eat not so late. Maybe this started happening around the time of my increased drug regime and therefore is "eating" away at my stomach, or something. At least we have a term to look into now and aren't hunting, as it is definitely stomach contents I'm coughing up and not mucus production like I first thought.

Regards,
Shane

2011-12-13: CyberKnife surgery BOOKED (yay)

Ok, they finally booked some time on the CyberKnife machines

CyberKnife:

• No special drugs required to prepare for these procedures. So, unlike the brain CyberKnife, no longer require large dosages of dexamethasone.
• CyberKnife dates booked: Fri, Mon and tentatively Wed or Thu next week.

 Pain, Constipation, Comfort management:

•  Ever since I've been on regular pain drugs since this whole liver expansion problem started, I've had juggling problems between pain, constipation. Inability to eat properly because of the migraine surgical trigger point combined with constipation preventing digestion. etc.
• So, at first I was on individual pain meds...
• Then I was on 3 mg Hydromorph Contin, 2x / day (12 hr duration each)
• Then I was recently moved to 6 mg Contin, 2x / day...
• Well, they decided that I was having to take too much "breakthrough pain" because of my digestive problems preventing my being able to process my pills in a reasonable time period.
• So now I've been moved to the Patch for pain.Something called "Fentanyl 2.5 mcg that lasts for 72 hrs". Breakthrough pain meds continue to be Hydromorphone 2-3 mg as required, or Motrin (Imodium 300 mg) or Tylenol 500 mg.

Other:

• I wasn't going to mention this, but it was mentioned how tired I appeared lately. Part of that is a fear of going to sleep. Sleeping on one side, I get heartburn, the other side, I get heartburn. So that leaves my back. However, sleeping on my back to deep REM sleep causes mucus production, coughing and therefore lots of internal organ pain. No idea why.
• Fear is its related to my 12 lung tumors.
• I've started taking a sleeping pill "clonazepam (0.5mg)". In order to try to sleep through any problems Results are inconclusive at this time.

Regards,
Shane

2011-12-07: CyberKnife surgery TBD, pain management

Status as of Dec 07,2011:

• Now: Still waiting for CyberKnife planning to complete. No date set yet for the surgery, but should be in next 7-14 days based on machine availability.
• Dec 05: Met with palliative care doctor in Hamilton. Increased pain dosage, but not used to it yet. Still feel pain, near liver, but having strong drowsiness and a little dizziness as side effects. 
• Local GP doctor has agreed to become long term palliative care doctor to provide local visits instead of the long Hamliton trips.
• Jan 03: MRI of brain
• Jan 09: Doctor follow-up of brain MRI

-- Shane