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

2011-12-01: CyberKnife planning started

I did the CT scans to initiate planning for CyberKnife today.

My poor dad. He had to wait through 1.5 hrs of them trying to get me hooked up to an IV through my port. They apparently needed a high pressure port connector and the planning dept. wasn't prepared for a port. They usually use I.V. through veins.

Then there was another 1.5 hrs of scans. They scanned me with and without contrast dye. With and without me breathing. The CT scans with me breathing were "slow motion" meaning they wanted many pictures of how I breathed and I moved through the scanner at a very slow table speed (table moves me through the scanner, scanner itself is very heavy and doesn't move).

So, now they have images and a profile of how I breath. So the next step is to set up the planning for (a) what tissue in the CT images to target and (b) when to have the radiation beams "on" and when to have them "off" based on my breathing position and the tracked x-ray position of the gold trackers in my liver.

Once they are nearing completion of the planning then I will receive notification of a date / time for the CyberKnife treatment to finally relieve me of this liver pain and pressure. I hope anyway... there is a good chance the pressure/pain will get worse before it gets better. There is often swelling from radiation before shrinkage of the tumor tissue. Sigh...

On a lighter note, I may have a cancer friend over for a social meet tomorrow. Should be fun. Otherwise I'd be stuck in a hydration chair for 3-4 hours with little to do.

Regards,
Shane