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

2011-11-29: CyberKnife planning scheduled.

FYI: Official planning date set. CyberKnife planning (CT + mask fitting) scheduled for Thu Dec 1st. CyberKnife treatment to occur 1-2 wks after planning (planning takes at least a week due to determining in 3D what tissue to zap and what to preserve).

-- Shane

2011-11-24: Official word on brain MRI from Nov 17th

Ok, saw the brain oncologist today and got the official word (instead of 2nd hand from a phone call).

Good News:
The old April tumor isn't "reactivated". There is some brain tissue swelling around the tumor, but apparently that is expected for as long as a year after CyberKnife treatment.

Bad News:
6 new tumors in the brain. That brings the total to 8 now. These 6 new tumors are all less than 5mm (0.5cm) in diameter with many only 2mm (0.2cm).

Doctor recommended (as expected) whole brain radiation. However, once we explained the situation with my liver and lungs we agreed to postpone any treatment for now in favour of treating the more pressing liver pain.

We've rescheduled an MRI in Jan to see if any are growing aggressively. He's willing to consider CyberKnife on quick growing tumors as an option to preserve quality of life in the short term, vs. long term "cure" of killing all tumors with full brain radiation.

I haven't given up the option of full brain radiation. If the liver pain is resolved in Dec and the Jan MRI shows even more tumors, then I may consider full brain radiation instead of the threat of my brain being over-run by cancer tissue. Apparently full brain radiation has a good success rate vs. small tumors, but not large ones. Also, if I do get full brain radiation, there will be no escaping the extreme fatigue side-effect. However, the other side-effects are "rare"; though I don't consider 1 in 10 rare... lol

Regards,
Shane

2011-11-24: Kidney and CyberKnife Update, correction about liver rupture timeline

Talked to my radiation oncologist today. Here's some updates:

Kidney Update

• Apparently the ultrasound didn't see anything in either kidney or my bladder, or in the surrounding plumbing that may indicate the left side pain I've felt for the past few weeks. I may be feeling "referent" pain from another source; possibly the liver or the lymph node near the kidney.
• This unfortunately (or fortunately because no new problems?) means that there isn't any steps they can taken to solve that left side pain using the equivalent of a pipe-cleaner solution that they had suggested. (If vein was clogged and causing pain, pipe-cleaner (catheter) to unclog it might have relieved pain.)

Cyber Knife Update

• They like to wait 10 days after tracer/marker insertion (to ensure tracer movement due to swelling stops) before doing the CT scans and mask creation that begins the "planning" stage. So 10 days equals mid-week next week. I'm expecting a call of a date from the scheduling person soon to say exact day / time.
• The actual Cyber Knife operation usually takes at least 1 week after the planning scans are done to give time for the actual mathematical 3D planning required to target the right tissue (tumors) inside the target (liver) to a millimeter (mm) accuracy. So the week after next would be the soonest I can expect a date/time for the actual radiation to be applied.

Correction regarding my liver

• I may have made the following statement, either in person (definitely) or in my blog (not sure) but it is wrong. The statement I was making was, "If my liver capsule (lining) ruptures then I will only have at most 2 weeks left to live."
• I apparently picked up this time schedule from an isolated case where the person whose liver did rupture hadn't yet been diagnosed with cancer, and when the rupture occurred was not treated in a timely fashion allowing many days of internal bleeding before being treated.
• In my recent research, I could not find another case that had as short a time-line as that 2 week case. In all other cases I've found, the individuals lasted many months (or in some cases years) after surgery was able to repair the rupture/tear and suction out any leaked fluid.

So in summary, if I've hinted that I may be lucky to reach Christmas 2011 due to the threat of my liver rupturing, then I appologize. I was working with invalid assumptions and Christmas definitely looks doable, though lasting until the end of the kids' school year may be more of a challenge.

My goal is still to last until Kaye finishes her schooling in Dec of 2012 (at least). Though that is likely a very optimistic goal at this point.

Regards,
Shane

2011-11-22: Recovering from tracers. More bad news.

Recovering from Tracer insertion surgery:
» I'm recovering well from the tracer insertion. It doesn't hurt as much today as yesterday. I didn't require any breakthrough pain meds today (not like the tonnes of it yesterday). I'm not doing any lifting today, just taking it easy. Kaye took the day off school yesterday and today to watch me and make sure she does my lifting for me, not me. (Example: laundry needed to be done today, kids have karate tomorrow and their gi's weren't washed.)
» Thanks to mom and dad Boyce for bringing stew last night. The family enjoyed it.

More bad news (new brain tumor activity):
» The brain doctor's nurse called about my MRI last week Thursday. It unfortunately shows more tumor growth (additional tumor(s)) and that there is activity in an old tumor in my left lobe (so the first 2cm tumor's looking alive again, probably the cause of the seizure).

» I was talking to the doctor's nurse over the phone, so she could only give me general info, no specifics. I'll find out on my doctor's appointment on Monday. I think they wanted to see me earlier this week and to possibly start immediate full brain radiation, but since I'm on paliative care, and my liver is a potential immediate life threat, I will concern myself with that first.

» To go on full brain radiation would fatigue me greatly and possibly turn me into a useless vegetable until it's over. If I am on my last legs due to my liver, I don't want to go out as a vegetable. So I will pass on the full brain radiation until something is done about my liver. If I'm given a number of months extra life from relief of liver pressure, then I'll consider worrying about my brain. As I'll have time to work on it.

» When asked if I was having any head-aches or anything, I said no. So the nurse says that after talking to me and hearing that I have no present symptoms, she understands my decision and we'll talk more (with the doctor) on Monday's 9am appointment at JCC.

Regards,
Shane

2011-11-21: CyberKnife tracer insertion done.

Two needles inserting two tracers / markers per needle is done. Two tracers per largest two tumors in the liver. Surgery was performed without any problems.

Neat factoid: The tracers are gold cylinders. The gold doesn't corrode, interact with radiation or drugs (is inert) and shows up in x-rays. My liver tumors are now expensive. lol

No follow-up appointments yet. I expect to be called soon once they have arranged them.

FYI:

• R.F.A. (radio frequency ablation) has been ruled out. Tumors are too large, as expected. 
• Also, the discussion I had with the radiologist gave me the impression that while embolisation may be a possible short term palliative care measure, it would be extremely painful for a few days after the procedure, and the tumors (being so large) would relatively quickly find another source of blood and would continue growing after that. So long term (longer than I have? or shorter? not sure) it is not a viable solution. Especially with all the smaller tumor lesions spread through the rest of my liver. 
• The radiologists believe that CyberKnife radiation is my best bet at this time.

Regards,
-- Shane

2011-11-18: Friday update (MRI & CyberKnife tracers)

Just an update.
Past:

• Thu Nov 17th: MRI of brain, no problems
• Fri Nov 18th: Blood work done for Monday's procedure, to make sure I'm ok for it.

Future:

• Mon Nov 21st: Surgical procedure: insertion of markers / tracers into liver tumors as required for impending CyberKnife procedure. Insertion will be assisted via ultrasound machine to get correct 3D placement of the markers. Also during this time slot, since insertion will be done by a radiologist, and since it will be under local anesthesia, I will be consulting with the doctor to see if I'm eligible for Radio Frequency Ablation or Embolisation.
• Mon Nov 21st: after my procedure, I have brain Dr. appointment to go over the results of last Thursday's MRI. The purpose of that MRI was to have higher detail than the CT scan that was done after my Oct 23rd seizure. Purpose is to see if a 3rd tumor has made an appearance, or if the swelling of my 1st tumor still hasn't gone away and it was the likely cause of the seizure. We'll see.

Regards,
-- Shane

2011-11-13: Apps this week

Some cancer related appointments this week (more coming in days / weeks to come).

1. Monday Nov 14: Ultrasound of my kidney region. They want to see if there is anything they can do for the pain in that area of my lower left back region and the ultrasound will give them a better picture of what they can do for me.
2. Thursday Nov 17: MRI of my brain. Check-up after my Oct 23rd seizure in higher detail than the CT that was done right after the seizure. They brain oncologist will be meeting with me Monday Nov 21st to go over this scan to see why I had a 2nd seizure.

That's it for now. Other than bi-weekly hydration and the usual family events (like kids karate, etc.)

I'm still waiting for appointment times for the CyberKnife marker insertion then "planning" and for meetings with the radiologists for the R.F.A. and Embolization feasibility analysis.

-- Shane

2011-11-09: New treatment? Still maybe...

To Blog followers (and family members),

I don't have good news, but I don't really have bad news either. It is more like no news...

I guess it is more bad than good, but it isn't a "no treatment" ruling yet, so that's good news. (Maybe...)

• I'm not eligible for the newly government approved treatment / chemo drug. Without even testing if I have the required cancer marker in my esophageal tissue, I've been disqualified by the small print requirements. I have to be on my first or second round of chemo to qualify. I'm on my fifth or so round, so I have too much residual tissue / organ damage from being on chemo so long that I don't qualify.
• Monday, I was disqualified for CyberKnife as well due to a number of concerns.
• I was also presented with about 6 other options, then systematically I was dissuaded from attempting to pursue those options because of separate concerns in each treatment's side-effects and risks.

Well if nothing else, I came out of the meeting more educated.

Note: My biggest risk right now is the "capsule", or outer sack lining of the liver, rupturing or leaking fluid into my abdomen. FYI: Fluid = blood. So if I start leaking from the liver, I've only likely got a few weeks to live at that point. So all discussion at this point is to prevent that from happening. Right now I'm receiving pain meds to help me through the day. They're working. Last few days I've been doing errands and going to the library on my bicycle instead of being bed-ridden all day due to pain.

After the discussion, there ended up being three treatments that we were going to "explore". No guarantee any would be performed, but they would investigate my scans, and the physics involved to see if the treatments were feasible. They are:

• Low intensity general radiation, similar to what was performed on my chest after my July 2010 surgery, but at a much lower dosage. Problem, they'd have to train me to breath so that the diaphram can push my liver away from my heart during the procedure. There is only a small fatty wall between my largest liver tumor and my heart. They figure this may be my best bet to pursue as they should be able to avoid the gut, and only the bottom part of my right lung would also receive radiation. [update Wed Nov 09] I received a call from the doctor saying that they don't think that the breathing would be sufficient to remove the risk. The general radiation would not be accurate enough. So they are discouraging this method as well.
• Radio Frequency Ablation (RFA). This is where they stick rods into the tumors and make them vibrate to generate heat. Essentially microwave cooking the tumor from the inside out. The concern here is that they make large holes in the liver capsule (lining) and the tumors are so large, that they can't cook the whole thing they way they usually do. Instead, they'd have to poke multiple holes, and cook multiple tumors. RFA requires a radiologist, not my radiation oncologist, so my doctor has referred my case to another doctor to review my scans to see if this is physically possible. He doesn't think it will be.
• Embolization. For this, they would stick a catheter / tube up from my leg to my liver and traverse the vast array of artery capillaries. They would then purposefully "clog" the capillaries that are feeding my tumors. The purpose would be to starve the tumors of needed oxygen and nutrients from the blood. They would shrink and pressure on the liver lining would be relieved (hopefully giving me a few months of reduced pain). Problems: often hit and miss as you have to traverse a 3D maze and put goop in to clot the right areas. Also requires a radiologist, and a lot of their time planning, since it is so complicated. So this has also been passed on to another doctor to see what their opinion is from my scans.

As per the "update Wed Nov 09" that says that general radiation is unlikely to work for me, they're pursuing another option to research in parallel while we're waiting on the feedback from the radiologists looking into RFA and Embolization. Which brings us back to ...

CyberKnife

• On the brain is easy. There is no collateral damage from crisscrossing beams of radiation, and the tumor is so differentiated from the surrounding tissue that it is its own positional marker when performing positional x-rays to adjust for breathing and motion by the patient. However, the liver, x-ray isn't good enough, nor is the contrast sufficient with all the other organs, ribs, etc. in the way. So, the doctors have to implant artificial markers in and around the tumors in order to be sure that breathing and motion don't interfere with what they are zapping.
  
• FYI: CyberKnife is WAY more powerful than general radiation. Discussion was about cracking ribs that are in the way of the liver (liver tumors are under last two ribs, not free and clear of ribs) due to the high dose of radiation. Damage to the lower lung (which overlaps the liver / ribs in the same area). Damage to the heart that is adjacent to the largest tumor.
   
• On top of that, the tumors are larger than normally done by CyberKnife. So more markers are required and it takes more scan time, so more residual radiation to surrounding tissue.
  
• Note: each marker insertion requires additional penetration of the liver capsule (lining). This raises the risk of infection, bleeding and unintentionally stabbing the lung with the marker insertion needle (since the lung is hanging out nearby).
  
• Ok, having said all this bad stuff about CyberKnife, it is WAY more accurate than general radiation. So it can overcome the proximity to the heart problem. They are also considering running it at radiation dosages much lower than they normally would (I'm abnormal in all ways for a typical patient they treat, so almost everything is an experiment with me...). The lower dosage with increased accuracy may be sufficient to shrink the tumors and relieve pressure on the liver in a palliative measure. They wouldn't be using normal tumor killing radiation dosage levels because of all the risks already mentioned. As stated before, their goal is "quality of life" in my last few months, not "cure". I may not have 6 months of recovery time for a "cure" type solution, at least not 6 months of being in more pain due to the treatment than I would have been from the cause.
  
• 'So I gave them the go-ahead to pursue a low dose CyberKnife.

I'll be given the CyberKnife markers, then a week for the swelling to subside (and therefore their movement inside me due to swelling.) Once the markers are stable in their position, they can begin planning a CyberKnife program. Meanwhile, we await the radiologist's analysis of the RFA and Embolization.

For now, none of this is happening... it is all "to be planned". And may at any time be cancelled. So I'm in a holding pattern.

In the mean time, I'm gaining weight due to an increased appetite and due to being able to take some sugar now that the 24 hr pain killer "Hydromorph Contin" is constipating (counteracts the sugar dumping, and I retain food longer to get more nourishment out of it). Also, the little bit of Dexamethasone I'm on (yes I've been on that now since the seizure) increases my appetite as well. It also keeps me up well past Midnight giving me an extra meal time. So people say I look much healthier now... (read as "less emaciated").

Enough ramble for now. I'll update more when I know more. For now... it's day by day hoping my liver lining doesn't rip.

Regards,
Shane

2011-11-03: New treatment? Maybe?

Just received a phone call from my oncologist tonight (Thu Nov 3rd).

She has given me some hope. I don't have a lot of details, and I will post again when I have proper spelling and specifications, but for now here's a very rough sketch of what they are looking into for me.

1. To help with pain in my liver, and as purely a palliative treatment option, not a cure, they are going to (finally) look into Cyber Knife on some of the tissue in my liver. The hope is to relieve some of the pressure to stop (or ease) the pain and reduce the risk of tearing the fluid sack surrounding the liver. This may give me a few more months at least. It's a start.
2. As recently as Tuesday Nov 1st, 2011 (2 days ago), the government has approved a new drug and clinical trials for it. I don't have the spelling yet, but here's what has to happen for me to be eligible for this new drug trial. First, a sample taken from my original esophageal cancer tissue (taken June 2010) must be analyzed and be shown to have a specific cancer "marker" or "trait". If it exhibits that trait, then I will be eligible for the new drug. The new drug would be taken in combination with other more traditional chemo drugs like Cisplatin (the nasty nauseating one).

Oh, on a side note, finally received a "lift chair". The thing is MASSIVE. They had to take back the first two chairs (that were more my size) due to first electrical problems (almost fried the delivery guy), then a mechanical problem (would have lifted you off the side of the chair, instead of in front of the chair) because the wood broke. So the 3rd choice was a chair for someone 7 feet tall and 350 lbs. Kaye (or a kid) and I can sit side by side in it and cuddle. So I'm not sure if it's as helpful as it would be if it was tailored to me, but it's free and I'm sure it will help more later on than if I didn't have it.

Note: I may also be trying "Essiac" soon, an herbal concoction favoured by many cancer patients as it is believed to boost the immune system. It's considered naturopathic in origin and clinical trials have been inconclusive. They all seem to agree that it isn't a harmful substance, and does exhibit some immune system benefits. So as for its cancer fighting ability, that purely depends on the person's own immune system to fight it off. But if you have cancer already, then that isn't guaranteed to work in anyone by any stretch of the imagination.

Regards,
Shane

2011-11-01: Palliative care update

Not great news...

I saw my palliative care doctor yesterday. I expect an update from my oncologist today or tomorrow by phone.

I don't expect much from my oncologist as my brain activity will likely invalidate me from being eligible for clinical trial experiments.

So, on to palliative care... The pain I've been trying to deal with for the past two weeks in my lower back is apparently more than just musculature or spinal. I have 3 Dr. opinions that all are telling me that it is likely referential pain caused by the tumor pressure on the fluid sack lining around my liver and/or pressure on my ribs from the same tumors. So I'm likely to be in pain for the rest of my life. The next step is likely a tear in my liver fluid sack lining resulting in a leak into my stomach that will cause eventual bloating from fluid, not from fat. That may alter the location of the pain in my abdomen, but not eliminate it.

So I'm on new drugs. A slow acting (12 hr) version of hydromorphone called Hydromorph Contin (3mg). Starting out at once per night before bed for 3 days while my body gets used the drowsy side-effect, then twice a day after that.

So I'll still likely have to take the occasional ibuprofen for swelling and occasional hydromorphone. I have to start logging my usage of them so that the long acting hydromporph contin amount can be adjusted as part of a longer term pain management system.

I'm expecting a 3-position "left chair" some time today. Kind of like a lazy-boy chair recliner that can push me out of it so I don't have to lift myself out of it.

-- Shane

2011-10-28: Seizure review

A bit late, but here's an update on the seizure from last weekend.

Around 3:30pm October 23rd, 2011 was my 2nd ever seizure. It happened at Winners in front of Zoe (my 12 year old daughter). Long story short, I seem to be fine now. No side effects.

Long story made long, here's more details. I had no head-ache or other warning. I was fine, just looking for clothing for Zoe. Then my right hand started shaking. When I told my hand to go back to the handle of the shopping cart, it ignored me and started rising (same symptom as in April 2011). Then I said to Zoe, "Oh oh, I think I'm having a seizure." I then started to get closer to the floor knowing what would come next. (In April, I was fully standing and fell back onto my open dishwasher door then onto the tile floor giving my back and head a couple of bruises.) I managed to get 3/4 of the way to the ground and lost complete control, falling the final 1/4 distance to the floor onto my back. I could still hear Zoe say, "Daddy? Are you faking?" I tried to respond but couldn't. Then I felt my whole body get wracked by electric impulses. Like I had just stuck my finger in a socket and felt the tingling over my whole body. I then lost conciousness.

From what others have said, the seizure lasted about a minute. I bit my lip (hard, with blood) and frothed a bit at the mouth. That's when Zoe realized I wasn't faking. A passer-by called the paramedics and the store manager called my wife (Zoe knew our home number). I remember starting to come too on a stretcher still in the store with the paramedics, my wife and Zoe around me. I remember them asking questions but not being very helpful with answering them. In the ambulance on the way to the hospital I regained cognative abilities enough to answer all their questions, though my answers were slow at first. By the time we reached the hospital I had pretty much recovered. It took about 15 minutes to recover in total so everything happened pretty fast. In April, recovery took about 30 minutes. There was no witness to April's seizure, so we don't know how long that lasted.

At the hospital, we wanted to know what happened. When they found out I was in paliative care, everything became optional. Do I want to be resussitated (CPR) if required? Yes. Do I want a blood test? Yes. Do I want a CT of my head? Yes. OK, then we had to wait 5-6 hours for the results as we sat in the hospital twiddling our thumbs (we didn't come prepared with books or other ways to pass the time).

The lab work was inconclusive. The CT showed no new tumors (just the two we already knew about). April 2 cm tumor has shrunk to 1 cm. The later 0.8 cm tumor has shrunk to 0.5 cm. However, there was still noticeable swelling surrounding the 2 cm tumor area. Since the 2 cm tumor was in the left brain (which controls the right side of the body) it makes sense that its swelling was likely the trigger for the 2nd seizure.

After discussion with my oncologist, radiologist, and an attempt to get in touch with my neurologist (unsuccessful, apparently he got kicked out of his office by the city for running a business in a residential area... oops) we decided that for the next 4 days I'll go back onto 4 mg of dexamethasone per day to reduce the swelling in my brain, in my liver area (under floating ribs) and in my mid back (last two areas are causing major back pain lately).

I've spoken with my new occupational therapist provided by CCAC Halton. She suggests that a "lift chair" may assist with lower back problem. It is like a lazy boy reclining chair, but provides electric lift out of the chair. They also gave me a shower stool to sit on, so that I'm at less of a falling risk in the shower as I get more fatigued and in case I have another seizure.

Nothing like the feeling of aging extremely quickly. Kind of sucks.

Regards,
Shane

2011-10-18: exercise

Exercised twice last week at home. Then did a karate class on Monday. Well, from my black belt perspective I can say it was a very tame class, one that most white belts would wish they could have. However, from someone coming off a year and a half of chemotherapy, I must say that I'm in a world of pain right now. Not unlike when the black belts were "training" me as a brown belt (torturing me would be more appropriate). Just goes to show how much muscle I've lost and how out of shape I've become.

We'll see if I'll have the bravery, or foolishness, to attend class again tomorrow, or postpone to Friday's class instead to give myself more time to recover.

-- Shane

No more chemo, or anything else...

I'm free and clear of treatment starting now.

Meeting with my chemo oncologist says that they have nothing left to treat me with and at this point with my advanced progression being larger than their threshold size, they are reluctant to perform other treatments.

That's not to say they can't perform other treatments, just that if they did, they would have to charge me for it out of my pocket and the hospital would no longer pay for the treatment. FYI: in case you didn't know, each treatment goes before a board of directors for approval of cost from the hospital's budget. It is not paid for by OHIP or by my insurance company.

So, at this point I either let nature take its course, or I bankrupt my family in the search for people willing to deal with massive tumors. Or I try things like Essiac and see if there's anything to the hype that it is a cure for cancer... somehow I don't think so, but apparently it doesn't hurt so I might try it anyway.

So that's the status. If nothing else happens to change the current trend of tumor growth, I figure I'll be lucky to see the end of my kid's school year. But that's my guess, not anything like an accurate estimate. So take it with a grain of salt as they say.

Now that I don't have to worry about chemo destroying my muscles and consuming my nutrition. I think I might take up Karate again. Now that I can repair muscle tissue after its damaged. So, like Terry Fox, I'll go out jogging. Tho he's a much greater man than I will ever be.

-- Shane

2011-10-04: Results of CT scan, not good

Update:

• Had to take dexamethasone (half of 4 mg tablet) on Monday and Tuesday for headache / brain swelling.
• Tuesday night, didn't get any sleep at all. Wednesday attempts to sleep during the day failed.
• Wednesday night (Thu morning) managed to get a good nights sleep
• No headache on Wed (even without the sleep), so no dexamethasone (also no dex. on Thu.)

CT Scan of neck to pelvis area:

• Right lung, up to 8 nodules noted. Largest is 8 mm. Many nodules are 2 to 4 mm larger than last scan.
• Left lung, up to 4 nodules noted. Size not indicated, so smaller than right lung nodules.
• Liver lesions have increased in number
• Largest liver lesion in left lobe measures 7 x 5.2 cm
• Largest liver lesion in right lobe measures 5.5 x 5.4 cm. 
• There is a new soft tissue that is likely a new lesion / nodule on the left paraaortic lymphadenopathy. (aka a lymph node near the main aorta).
• Good news: Stomach and intestines are fine. No mediastinal, hilar or retrocrural lymphadenopathy (sounds good, don't ask me what it means). No pleural or pericardial effusions. No abnormal axillary lymph nodes detected. Nothing in the spleen, pancreas, adrenal glands or the left kidney. Right kidney shows some nodules that aren't growing and are likely cysts. No abdominal or pelvic lymphadenopathy. Nothing in the urinary bladder, prostate or seminal vesicles. No free fluid in the abdomen or pelvis. Small and large bowels are clear. Nothing in the bone (Yay! I hear bone cancer hurts a lot.).

 So good news! I have areas that are still without cancer! Wahoo! ...

Well, the blood work came back good. My liver and other organs are all still functioning. I apparently have lots of lung and liver left, so I'll be around for many months still. However, my main doctor wasn't there today, so I can't discuss new alternatives, just the CT and lab work results.

So no chemotherapy today, as it isn't working. I've scheduled a new doctor's appointment for Tuesday with my actual doctor so that new treatments can be discussed. Or I just go treatmentless and let nature take its course.

We'll see.

Regards.
Shane

2011-10-04: less side-effects?

Morning... headache is gone, Yay! That means last night's emergency dexamethasone dose helped. Damn! (Yay?) That means I'm not free of the stuff yet. Sigh...

-- Shane

2011-10-03: more side-effects ... (more dex)

I can't believe I just voluntarily took more dexamethasone... The headaches are too much, must reduce the swelling in my head...

-- Shane

2011-10-03: more side-effects

End of Warning:
My speech filter is back in place. My last dexamethasone was Saturday.

New side-effects:
Now I'm dealing with headaches (took Motrin [ibuprofen]), dizziness and fatigue. I spent most of Monday passed out on the couch to be near my sick son who watched TV all day under a blanket (also on the couch, but the other end of it so I don't get sick). Half of that was hooked up to the hydration I.V. pole.

Other:
Supper time, I feel a bit better now. Well enough to make tacos for dinner.

You can visit if you wish, but I'll probably be talking slowly and looking spaced out. ;-)

Tuesday Oct 4th:

• I have a torso CT scan to check on liver/lung status 
• and lab work.

Thursday Oct 6th:

• I have a doctor's appointment with the Chemo doctor, 
• and possibly chemo after the appointment.

Regards,
Shane

Warning: 2nd CyberKnife side-effects

To all blog followers,

Apparently steroids (dexamethasone) + lack of sleep + getting my brain zapped equals an unpleasant personality. So I'm going email silent until the dexamethasone is out of my system. I think I've offended too many people in a very short period of time with my thought filter turned off...

-- Shane

2011-09-30: CyberKnife done. Feeling fine.

Done my CyberKnife treatment. No side effects so far. Or at least nothing that a strong coffee hasn't cured so far.

My mom and dad were there and I had them take photos this time. I'll update the site a bit later to show them once I have a chance.

Regards,
Shane

CyberKnife scheduled...

Date for CyberKnife is Friday Sep 30th at 2:30pm. Let's hope it goes well.

-- Shane

2011-09-24: Doing fine... just waiting...

Doing strong. Rather, being Mr. Mom for a few weeks is building my endurance and strength. I can do more now than at any time since my July 2010 surgery. So that's good news. Still can't feel any of my tumors, so pain and comfort is managed. Only real pain and discomfort comes from my messed up digestive system. It is more messed up lately since my chemo though. So I've been taking Hydromorphone to help with cramps and abdominal pain and its constipating side-effect helps with the runs from eating foods with sugar, or that my chemo intestines don't like.

Mask fitting and CT scan for CyberKnife planning happened two Thursdays ago. MRI of the brain is scheduled for Sept 27th. That's usually the last step in planning confirmation before CyberKnife is scheduled. But they haven't given me a date for that yet. I'll probably find out near or after the 27th when I'll go under the "Knife".

-- Shane

2011-09-13: 2nd brain tumor decision

Ok, met with my chemo doctor today and weighed the options between her and my brain doctor(s)...

Decision:

• Continued with chemo today. So I'm going to be not at my best for next couple of days.
• Instead of my next chemo (in 2 weeks) I will instead have CyberKnife done to my 2nd brain tumor.
• CyberKnife requires at least 1 week chemo free before treatment, which is satisfied by this arrangement.
• Next CT of my chest/abdomen is scheduled for Oct 4th. Lab work will be the same day.
• Oct 6th I'll meet with my doctor to review the CT scan and decide if the chemo is working on the liver. (CT results depend on 3 treatments; I will have had 3 treatments, missing my 4th treatment; Therefore the CyberKnife interruption will be minimal). If the chemo is working then we will continue with it the same day (Thu Oct 6th). If it isn't working... not sure, we'll weigh my options if that comes to pass, let's hope this doesn't happen.

Regards,
Shane

2011-09-12: 2nd brain tumor detected

Blog update - 2011-09-12: 2nd brain tumor detected:

First the good news... I have been feeling great lately.

• I went to African Lion Safari on the weekend (for 9 hours), 
• I walked my children too and from school for their first week of school. 
• I even played catch with my son after school for a while. 
• Today, I managed to load 3 CRT monitors, 2 computer cases and a heavy toilet into my trunk and hoisted them into the garbage dump's large bins. (No, everyone didn't get a computer upgrade, these are clutter from more than a year ago that I'm finally cleaning out of my storage space.) 

 As a result of all the exercise, I'm very tired, my muscles are very sore and according to my young son, I snored on the couch during a TV program this afternoon. *laugh*

I've also been eating liver and other healthy alternatives (other than McDonalds) in preparation for my lab work tomorrow (Tue).

Thanks dad for the tremendous help with our two toilets! They needed it!

Now for the bad news... The MRI results show a new growth in my brain that is 5mm in size. That is small compared to the other one that was 2 cm (i.e. 20mm or 4x the size of the new one). The options to remove it are:

1. Full brain radiation for a couple of weeks (daily) with more recovery time required and a larger gap with no chemo (4 to 8 weeks)
2. CyberKnife (radiation surgery) to kill it. This may only have a 2 to 4 week delay of chemo, and this time they are going to drastically reduce the amount of dexamethasone so that the secondary infections/side-effects will be minimal. The minimal side-effects will allow for continuation of chemo quickly.

However, although my preference is for CyberKnife, nothing will be decided until my lab work and doctor's appointment with Dr. Dhesy-Thind (my chemo oncologist / doctor). We will decide what options are best all around for my whole body as well as discuss what the next steps will be after the brain is dealt with (again).

So... I'll update again tomorrow after my chemo doctor's appointment.

Knowledge 101 note: Keep in mind I have esophageal cancer that has metastasized (transferred) into my liver, lungs and brain. So I don't have "liver cancer", "brain cancer" or "lung cancer" as those all involve cancer tissue that originated in those organs. I have esophageal cancer residing in my liver, brain and lungs. The treatment is completely different than if the cancer started in those other organs, as the tissue that makes up the cancer is completely different tissue cells. So for those looking up alternative solutions for me on the internet, always look for esophageal solutions. A solution specifically for "liver cancer" doesn't apply to me, as that isn't what I have. Thanks.

FYI: Kaye and I knew this was a possibility and we are not affected by the result (emotionally; at least I'm not), other than disappointment. At this stage in the game it is just a "deal with it and move on" approach for us. Another to-do list item to tackle.

Thanks and regards,
Shane K. Boyce

Fri Sep 2: MRI

MRI scan was uneventful on Friday, should find out the results Sep 12th when I see my "head doctor" next. Chemo bottle disconnected just prior to the MRI on the same day.

Saturday, hydration was a no show, so it was a "break" day to just recover. Used the time to set up a BD gathering for Kaye.

Laser Tag didn't happen, but we'll go another time. After the last kids party there, we have 12x 2-for-1 coupons, so we'll be back. :-)

Kids all start school on Tue Sep 6 and Kaye's starting college Wed Sep 7. This will be fun. I'll be Mr. Mom for a while.

Note: I just wanted take the opportunity to publicly wish that a cancer patient friend of mine, David, and his daughter who is in hospital care right now, both get well very soon.

My next JCC cancer visit will be 9am labwork / doctor / chemo on Tue Sep 13th, the day after my 10:40am Sep 12th MRI review appointment.

-- Shane

2011-08-31: Yay chemo! (?)

White blood cell counts were good this week. So I received chemotherapy. I'm also on the 48 hour "bottle" of chemo that is in a pouch at my hip.

I guess the liver and kidney and calcium supplements last week did the trick in recovering my blood cells. Yay!

The question mark in the subject is because I have mixed emotions about chemo. Namely, I will be looking forwards to some nausea for the next 3-4 days.  (So Axel, Friday's laser tag may have to wait until Saturday...)

Other than that, I'm doing well. Kaye's had her first college course and we're prepping the kids and house for back to school.

-- Shane

2011-08-23: No chemo Again...

Blog entry:

White blood cell count too low: 2.8 rating where they prefer around 4.0 or higher. Neutrophil count also too low: 0.9 rating where 1.5 is their minimum consideration.

So, chemo postponed another week.

FYI: I started loosing hair like crazy yesterday (Monday) so I shaved my head to avoid the mess. I'm bald again...

Regards,
Shane

2011-08-16: No chemo, white blood cell count too low

To all my blog followers: 
    Thanks to all continuing to follow my blog and for all the supportive comments.

My total white blood cell count was too low today to continue with Chemo. The sub-component white blood cell that they track for specifically fighting diseases was OK (borderline), but the total of all white blood cells was too low.

So they are going to postpone my treatment 1 week to allow my bone marrow to recover more.

They gave me a super strong dose two weeks ago in the hope that I could handle it. Looks like it was too strong so next week they will reduce the potency by 20% and I will be receiving an 80% dose of the chemo drug. That is, of course, provided that my white blood cells have recovered by next week. I may have just been on chemo too long in general and my bone marrow is "tired" and isn't working as efficiently at making blood cells.

Other than that I feel fine. I even went to laser tag on the weekend with my daughter and her friends for her 11th birthday. So I'm capable of decent cardio. Just not for prolonged periods. But I handled two 15 minute laser tag games well (1 hour apart) and even got the top score in the 2nd game. (I used to be a member of Laser Quest in Mississauga for a year back in the days when I was a united way big brother. So I have an unfair advantage when I'm actually trying...) The first game I didn't do any cardio... just walked around and shot occasionally and let the kids use me for target practice.

Sorry for the bragging... It's just that I haven't done anything athletic for over a year (well, except for the push-up challenge) and I felt proud of being capable of doing well in a laser tag game. It's the little things that help motivate one in times of stress. ;-)

I'll use this time to plug the new (only 1 month old) laser tag establishment in Milton. I've been there twice now, once with each daughter for their birthday parties, which the kids say they all enjoyed. The place is called "Epic Lazer Tag" (yes, they misspelled laser). Here's their web site:
     http://www.epiclazertag.ca

Regards,
Shane

Bad news, part 2 of 2 (ct results)

Blog Entry: More details:
First I'd like to clear the air about the last 9+ weeks. I haven't been hiding anything (Kaye said to me that someone thought I wasn't telling everything). Just nothing's been happening. The recent chemo had no side effects, so there wasn't anything to report. It was a great chemo to be on if I had to be on it for years. Unfortunately it didn't shrink my liver tumors.

I might not have mentioned in previous blogs that I am receiving home hydration of 1 liter of water over a 3-4 hour period each Monday and Thursday of each week. I also have had low blood pressure [95 over 60] on average over the past many weeks.

Ok, back to the current chemo...

Chest CT Scan showed:

• Lung lesion didn't grow. That's good, but it didn't shrink either.
• Largest lesion in liver segment II now measures 53x40mm (previously 45x34mm). Enlarging lesions are also present in segments V/VIII and segment VI of the liver.

Notes:

• This is the last chemo that Juravinski has to offer me. If this doesn't work, they would have to try to find an experimental "study" that I would qualify and try some experimental drug(s). This may result in travel to other hospitals. Also, if I have evidence of head tumors again, then I am disqualified for any study.
• Sept 02 is another MRI on my head.

For the record, I haven't given up, but they say prepare for the worst and hope for the best. So, here's the worst case scenarios...

1. MRI shows more tumor growth in the head. If untreated, then they would give me 2 months. Options include Cyber Knife again, but more likely they would do full head radiation. This would severely debilitate me (fatigue etc.).
2. If no head growth, but latest chemo (which is meant for colon cancer) doesn't work, then they would give me 6 months until the liver becomes very consumed, or other areas of my body get new growth.

If the latest chemo works, then who knows how long I could live. We'll see. :-)


Drug Details:

• Latest chemo is "irinotecan" (eye-reen-oh-TEE-can). Brand name = Camptosar®. They injected 500ml over 90 minutes.
• The irinotecan injection was accompanied by a vitamin injection of "Leucovorn" 250ml over same 90 minutes. This apparently makes the chemo more affective.
• I was also injected with a dose of "atropine sulfate" [0.4mg/0.25mg dose] into my subcutaneous arm tissue to stop the cold sweats, hot flashes and stomach cramps that I started to get from the irinotecan. I had to have this injection 20 minutes into my 90 minutes of irinotecan.
• I also had to take dexamethazone and ondancetron over a 3 day period to help with nausea and other side effects. Unfortunately dexamethazone SUCKS as stated in previous blogs. I must say that irinotecan can join that category.
• I also had to have a 650mg needle "push" of chemo "fluorouracil" also known as 5FU. I then had to carry around a 3800mg take home "baby" bottle for an additional 48 hour long injection. The bottle is now disconnected.

I feel ok today (Friday). Appetite is back. Not as bad as the chemo combo that I was on before Christmas. So I won't loose tonnes of weight.

The chemo regime will happen every other week. So 1 week on, 1 week off. Also, I see the doctor each time to see how I'm handling it.

Regards,
Shane

Bad news, part 1 of 2 (ct results)

I have bad news. CT scan shows last chemo didn't work. Liver tumors are larger.

I'll blog more when I'm feeling better. New chemo isn't making me want to type as I feel like crap right now.

I'll blog in a couple of days with medicine details etc., once I'm feeling a bit better.

Regards
Shane

CT and chemo

Monday July 18th I had a rush CT scan. Don't know why they rushed it. I'm also scheduled for a CT on Sep 02. I think that they think the Sep 02 one is an MRI, but that isn't what they mailed to me. The request to attend sheet says CT scan. Whatever.

Today, Tue July 19th, I had chemo. A bit of a longer wait than normal, but not too long. I'm at about 120 lbs right now.

The next doctor / chemo is Tue Aug 02, so the week of Tue July 26th I have off (3 weeks on, 1 week off, repeat... is my chemo schedule).

Aug 02 is my next doctor consult with the chemo doctor, so at that point I'll find out the results of the CT and what chemo I will be moved too, or what procedure we will decide to do next.

Regards,
Shane

Jul 13 - ok

July 13, 2011 - update:

• Chemo continuing every Tue, no problem.
• Home hydration continuing every Mon & Thu, no problem.
• Princess Margaret Hospital - "ocular oncology clinic" said they couldn't see anything in my eye. So the eye obstruction is going away on its own and likely wasn't cancer related. So as assumed, it was likely due to the dexamethasone.
• Next CT of liver / lungs scheduled for Sep 2, 2011
• Next Seizure doctor follow-up is Sep 27, 2011

-- Shane

3rd week of chemo - no interruptions

I'm into my 3rd week of chemo now. No interruptions this time (like a seisure!). Yay!

So just taking it easy.

Oh, I seem to have a low blood pressure problem, so I'm now going to be receiving "hydration" twice a week where they hook me up to an I.V. pole in my home for 3 hours each time and pump saline solution directly into my blood stream (slightly salty water). Today is the first day of hydration for me.

-- Shane

Good news, finally...

MRI from last week Thu June 9,2011 was reviewed this week Mon. The results showed that the zapped tumor is now half its size (which surprised them as it usually doesn't shrink so fast after zapping). So that's good news. Secondly, there were no new tumors showing on the scan. Yay, no new brain radiation required right now! Next MRI scheduled in 3 months time.

Chemo started last week Tue June 7th, 2011. The plan is to have chemo for 2 months interrupted, once per week as a Tue injection. The hope is to reduce the larger liver tumors. If that doesn't happen then a new drug will be used, or radiation surgery will be considered. The chemo drug is Paclitaxel. A CT scan is scheduled for the end of the 2 months of chemo so that we can tell if any progress has been made.

So I'm off to chemo today. Paclitaxel is a drug that doesn't seem to have visible side effects for me. The only side effect is reduced white blood cell counts, so I have to be careful with people contact. But no nausea, I can do complex brain thinking without distractions, etc.

Regards,
Shane

CT scan results back.

Status:

• Good: Pneumonia broke Sun afternoon. "Healthy" once again. yay.
• Good: Ok to resume chemotherapy. Had my once per week injection today.
• Bad: 1 week off because of low blood cell count + 1 month off for brain treatment + 1 week off for hand infection + 1 week off for pneumonia = I was only on chemo for 4 weeks spread out.
• Bad: As a result of minimal chemo, Liver tumors have all grown about 1 cm.
• Bad: Also as a result of chemo neglect, new tumor in lung has grown from 4 mm to 7 mm. Wasn't considered a tumor before, but its growth indicates it is likely an active cancer lesion.

Continue with chemo for 2 months, hopefully this time without interruptions. Then if this chemo isn't working, switch to different chemo drugs and keep trying.

End result... I'm not happy... The 1 month off due to radiation is why I didn't want the liver ones just killed from the start. It means things like the lung one can take hold. We stopped for the brain radiation and guess what... they all grew.

-- Shane

Well I've had a couple of crappy weeks...

Not great news,

3 weeks ago when I was weaning off dexamethasone. I got a few of those pimple like pus things on my hand... so I do what I always do with pimple like things (because its habit and I'm dumb), I popped them. Well, they got infected, I drained them with an alcohol sterilized pin (because they were two big to pop normally, and I only had one hand to do it with... ever tried to pop with one hand? Its hard.) Had to do that twice... seemed to work, no more pus was vsible, but they continued to get bigger and quite painful. So two Fridays ago, May 20th (I had just started Chemo the Tue 17th of the same week) I went to see the family doctor. He said they were still infected and that I required antibiotics now. Great... so he prescribed me with a weeks worth of antibiotics.

New week, 4 days into the antibiotic on Tue May 24, the doctor finds out about the infection and cancels Chemo treatment because they don't want me in the hospital because my white blood cell is too low and possibly causes the infection to run rampant in my blood stream. So no chemo that week. Ok, so antibiotic is slated to finish that Friday the 27th. Wed May 25th, I started getting cold chills and a mild fever. So I took Tylenol for the fever and it went away (while under drugs). By Fri the 27th I'd developed a dry cough to go with it and a pain in my lower lung area when I coughed.

Weekend of 28th and 29th. Kaye decides to take me to the emergency ward of the hospital once my fever was demonstrated (I couldn't prove I had a fever before Sat, because she always wanted me to check after I'd medicated myself, bad timing). Primarily because a prolonged (now 4 days) fever is bad for a Chemo patient. So Sat they did a blood test and an X-Ray of my chest. They didn't find much, possibly something in my lung but I was discharged with a "just in case" antibiotic if it didn't go away in a couple of days. However, the next day, an enterprizing doctor decided to relook at my charts and asked me to come in for more tests. They decided I should take a CT scan. I did. He then decided I had the start of pnemonia in the bottom of my right lung and that I should start my "just in case" antibiotic right away.

He was glad I didn't have a "leak" of air from my lung. It turns out that's why they called me in again the 2nd day. They confused my new "stomach" for a leaked air pocket behind the lung and thought my lung was punctured or something. Go figure.

So here I am, another Tue (May 31,2011) and again Chemo is cancelled due to infection. Not a good track record.

To top it off, I had an appointment with the eye speciallist and they have decided after the FA (angiogram of my eye) that they still don't know what is in my eye. They were disappointed that the sack on my retina wasn't leaking, then they would know it was water/fluid. Well, it isn't leaking, so now I have to go to Princess Margaret Hospital in T.O. and visit the Ocular Oncology department to get a higher resolution angiogram with equipment that they are apparently the only ones in Ontario that have this equipment. And they are going to definitely rule out if the blob on my retina is a cancer lesion or not. God I hope not...

Hopefully this week will go as follows: I'll have my Birthday on June 1st... while getting a CT scan at Juravinski cancer center... fun stuff. Then I'll continue to take my antibiotics and the pnemonia will take a hike. Then next week I can start Chemo again... hopefully. I'm definitely concerned with the amount of time that my liver lesions have been getting as a break. I don't want the cancer to spread elsewhere... stupid infections... ruined my plans.

So how's your couple of weeks been?
-- Shane

Withdrawal sucks...

Well, I've been off dexamethasone since Wed.

Now I'm into the withdrawal. Headache is constant, started late Thu. ... Hydromorphone helped, but it has a constipating effect. Combined with I was stupid enough to have tapioca rice bread which is made from yeast. So, it turns out that that bread combined with hydromorphone equals my digestion stops. So, I couldn't eat for 7 hours while the laxative took effect. Then things started moving again so I could eat.

The headaches are accompanied by dizziness. I made supper for the whole family (stew) with lots of chopping while dizzy and head-achey the whole time. No more hydromorphone for me. I'll deal with the pain in my head my own way (ignore it).

Looking forward to initializing my family's play all day all summer passes for the 5 of us to Ontario Place. It opens this weekend. Also to the Cogeco's service guy finally getting here... *wait, wait* ... He's supposed to increase my internet speed by 3x (30 Mbps) and overall download capacity to 125 GB / month. Sounds good to me. :-)

-- Shane

After radiation chemo starts today.

Tuesday (which is today) and next Tue I have chemo all morning. We're starting to work on the liver tumors again. Chemo is only the one injection per week. Paclitaxel is the chemo drug of choice at the moment and is the only one I've taken so far this year, so this is a continuation of the treatment from before the brain tumor interrupted.

No other significant news regarding the cancer to report. I guess other than no side effects from the radiation surgery. (Yay.) There were some side effects from the dexamethasone withdrawal. Namely mood swings, more emotional than expected, only slight headache (I thought this would be worst, so slight is good), slight depression for only one evening (which is totally unlike me, so Kaye and I know it was the drugs... so I had lots of sugar which made me very happy [drank a large bubbly, don't know the flavour, pop], but aggravated my [July] surgically induced reaction to sugar ... gas ).

Shane

Weekend of rest done. Weaning starts.

Well, the weekend of rest went well. No side-effects. Everything in the clear.

Radiation
The follow-up meeting with the radiation doctor stated that I am done radiation for this step. The weaning off of the dexamethasone begins Tuesday (tomorrow). It should take about 9 days to wean me off of it. Aggressive weaning as they say I'm still young and should be able to handle it. If I have sever head-ache, then to go back to previous step of the weaning and start again (3 day cycle of 3 cycles of weaning = 9 days, or more if I have to back-track... not bloody likely! I'll tough out a head-ache any day rather than be on this stuff any longer than I have too!!!)

I have an MRI follow-up in 1 month. To look for new cancer growth, and to see the blood vessel health around the previously killed tumor.

Seizure - Drivers License
I've received a referral to a brain doctor (Neurologist?) that will be tracking my Seizure activity (or lack there off) and control my seizure drugs going forwards. This is a requirement if I ever want my driver's license to be re-instated via a medical statement of mental fitness.


Chemo
Tomorrow (Tue) is my lab work and meeting with my Chemo doctor. She will assist me in continuation of the treatment that began and was so rudely interrupted for my liver cancer. While ultimately I want to pursue radiation surgery (CyberKnife) for the liver cancer as well, I need the cancer to remain until we find chemo that works on esophageal cancer that has moved through my blood stream to my liver (and I guess my brain). Without finding a chemotherapy source to kill the microscopic cells, then I'll be doomed to repeatedly get cancer popping up, and eventually it will be in my lungs and bone tissue among other places. This must not happen!

So, the liver cancer stays as a sign that the chemo drug they have picked has any affect at all on this genetic strain of cancer. If the cancer shrinks, then we have a working chemo, and we can then quickly pursue the CyberKnife for the liver cancer.

So, with this method, I can win the WHOLE WAR... not just a few battles. So far, I've won two battles: 1) esophagus, 2) brain. But if I have 500 battles left, and I lose most of them, then the war is lost. My goal is to win all battles, and the war, and to reduce the number of battles to the bare minimum (I have at least 3 battles left, which can all 3 be handled in 1 CyberKnife session, but there could be more... thus the chemotherapy to eradicate the unknown.)

Overall, I feel good to have the brain thing taken care of. I felt so good that last night I ate lots of food and stayed up until 6am (kids get up at 7am). Yes that was dumb... I won't be doing it again. But I was wired and happy so I couldn't sleep anyway.

-- Shane

CyberKnife radiation surgery done. Uneventful. Went well.

CyberKnife radiation surgery done. Uneventful. Went well.

No pain, symptoms of any kind except from laying in one place for 1.5 hrs, the back of my head hurt from being stationary too long. You don't feel the treatment at all. You don't feel after affects. The brain has no pain receptors in it.

I'm just tired and will be taking a long nap now.

Next week I have a follow-up appointment on Monday to discuss how the treatment went and weaning me off of dexamethasone over the next week or two (can't just go cold turkey, and there may be residual treatment swelling that it will help with over those two weeks).

On Tue I have labwork and an appointment with my chemo doctor to discuss the next steps / resumption of treatment of the liver tumors.

-- Shane

Portacath installed today

New Port
I had a portacath (aka port) installed today. They gave me a Bard Power Port model which is a newer model that can take "more" than the average port, like CT scan die etc. A port will act like a substitute vein for me, so that they can stop poking my veins and bursting them (since I have small veins, it happened more than it should). A port is an improvement over a PICC line as I can shower normally with a port (PICC required covering the site with a plastic bag and elastics) and a port will not require weekly bandage replacement (no bandages, except for the first week of healing, see image below, port is below the skin and will just be a bump).

The port, once I heal, will just look like a bump under the skin. Here's a Google image of a port I found in a male chest that "may" be representative (I won't know until mine heals) of what mine might look like... minus the nice muscled chest of course. ;-)

Upcoming Radiation Surgery (CyberKnife)
My CyberKnife treatment is scheduled for this Friday, May 06. Yay! Click the CyberKnife link to get detailed information about CyberKnife. There are only 3 in Canada, and the Juravinski Cancer Center where I've been receiving treatment for the past year is one of them, so no travel. Yay!

So in a few hours, the tumor will be dead. There will be residual swelling from the treatment and "possible" side effects (like another seizure) due to swelling until the brain calms down from the procedure. This recovery could take a few days.

My family and I will not be available over the weekend. It will be a time of rest.

Rant
Dexamethasone (the anti swelling steroid) is evil! I can't sleep properly (won't let me get more than 4-5 hrs sleep in a night), it is causing fungus growth (aka thrush) in my throat, lungs and acne on back/chest. It has caused a blister/water sack on one eye's retina so that I have slightly impaired (annoying, but not true impairment) vision in that eye. This has impaired my moods, judgement, disposition. I can't wait for the radiation treatment to be over so that I can get OFF of Dexamethasone! *** End of Rant.

Regards,
Shane

How am I doing after seizure? Ok.

This is just a small post to ease people's mind after my seizure episode on Monday.  Thanks for all the support and comments.

I feel fine, just as I did on Sunday before Monday's episode. My brain exploded, but recovered within 30-45 minutes and hasn't changed since. So other than that one event, the liver and brain tumors haven't made their presence known to me. Only to scans. Only pain is currently all surgical (from July) or diet related.

Some short points of interest:

• I had an MRI done Tue (day after seizure) that I'll find out the results of next Tue (after Easter)
• Regularly scheduled chemo on Tue was cancelled. Apparently chemo doesn't reach to the brain. The brain is a sort of "sanctuary" from chemo somehow.
• I've been put in charge of a few new doctors that will concentrate on neurological treatments: options include, but may not be limited too, or may not specifically include the following:
1. Full brain scan radiation, weak radiation everywhere. Would work similar to how chemotherapy works to dissuade new tumor growth in unknown areas.
2. Radiation surgery, surgical radiation, cyber knife, whatever you want to call it, another option is to have a multiple radiation beam (multiple weak beams) that intersect at a 3D point to become concentrated and strong. Targeting the exact location of the tumor to kill it in place. It would inactivate it and it would reside in my brain for the rest of my life, but would no longer be malignant/growing.
3. Last resort. (1) and (2) require some time off of Chemotherapy before and after the radiation treatment, so there is risk of the liver cancer getting out of control (for future possible cyber knife like treatment), but with option (3) this is much greater. Option 3 is to open up my head and surgically remove the tumor. This would cause more damage to brain tissue, and have a much longer recovery period (sans chemo). So they probably won't do this.

For those who are interested, here's the meds I'm currently on... old and new drugs:

• New: Lyrica  (aka Pregabalin) 75 mg, one tablet twice a day (8am, 8pm). This is an anti-seizure drug, with a couple of side-effects of increased appetite and some pain relief (both good for me).
• New (sort of, had it before, but not this regularly or this dosage): Dexamethasone 4 mg, 1 tablet 4 times a day (roughly 7am, 1pm, 7pm, 12 midnight). Dexamethasone is used as a nausea inhibiting steroid for chemotherapy, but for this it will be used as a anti-swelling of my blood vessels in my brain. Since tumors in the brain tend to swell blood vessels as they get greedy for their growth causing leaking in the brain and swelling.
• Old: For not having an esophageal stomach valve, and because some meds increase acid production... Ranitidine 15 mg/ml, take 10 ml once or twice daily. (I take it before bed only, but they say with the increase in lyrica and dexamethasone, I may wish to do it twice a day now.)
• Old: Hyrdomorphone 1mg/ml, take 1 to 2 mls every 4 to 6 hrs or as needed. I currently take it once every 1 to 3 days as needed. I don't take it that often and only 2 ml in one go. I have a decent pain tolerance, so I take it when it interferes or when someone nags me to take it. (Or when I get a migraine from my surgical scar from eating too much.)

 That's about it.

 Nothing concrete that they are going to do at this time. I'm on anti-seizure / swelling meds and I'm taking a small break from chemo before they begin radiation on my head.

I'll blog again once I know more.
Shane

New bad news... a bad fall caused by seizure and a new tumor

.
Old bad news made public:
Ok. I'm going to reveal something to the general public that was not common knowledge (my immediate family knew, and only a couple others).

Before my latest (current) round of Chemotherapy started (5 weeks ago), I was diagnosed with the cancer being deemed terminal this time. Since it was esophageal cancer that moved through the blood stream to the liver, they said that for people in that specific condition there isn't usually a cure (since it is all through my blood instead of confined to its original location, regardless of location, could have been liver, esophagus, other... didn't matter. It is a new ballgame once it enters the bloodstream...). They have had cases where they were able to prolong life for up to 12 months, but also, (when they chose to treat the symptom instead of the cause and immediately did surgery) people that lasted as little as 3 months. On average, they say, most people have about 6 months in my condition. Of course our hope is I have longer and we chose not to make public the declaration by the doctors.

Serious event / accident that happened today:
Today, I had a seizure and passed out, falling and injuring my mid back/spine and the back of my head (also scraping my hand and getting a fat lip). The seizure attacked my control of my right arm, which after a second had a painful spasm (making me drop what I had in my hand). Then it felt like my head exploded and I remember nothing until 30 minutes later after Kaye had returned home. So the next thing I remember is she had moved me to a chair and was applying an ice pack. I probably fell back onto the open dishwasher door/tray because I was emptying dishes at the time (so I'm lucky I didn't impale myself on cutlery, which was there!)

Kaye described me as on the floor sitting up (about 15 minutes after it happened, when she got home) with cutlery in my hand, but not doing anything except looking spaced out. I was only able to respond to all her queries with "I don't understand". Another 15 minutes later (about 30 in total) I started getting cognitive function back and I remember from that point on and was able to respond to questions.

She checked my blood presure and gave me some food and drink and then we went to the emergency ward of the Milton hospital.

Hospital Tests:

1. I was then given an extensive blood test for nutrition, blood cell counts (red and white) and many other indicators.
2. I was then given a CT scan of my head to try to find out the cause of what happened.
3. I was then given an X-Ray of my back (side and back facing) to see if I had done any spinal damage. As I was in intense pain and could barely walk with a cane.

Results:

1. Blood test was good. No problem discovered. Everything within normal parameters.
2. CT scan showed a  2 cm diameter tumor in my left brain lobe. It had a slight hemorrhage in its middle (bleeding) that may have been the cause of the seizure. That sucks...
3. X-Ray scan showed nothing wrong.

FYI: I've never, in the past year, had a scan of my head. So we don't know how long its been there, if it has grown, shrunk or what... Also in the past year, I had inquired why they never scanned my head (since I was worried about it on a number of occasions) and their answer was they wanted to limit my radiation exposure to what was necessary and they had no indication of anything wrong with my head (little did they know...)

Futher events:

• I have been given a new prescription for anti-seizure drugs that I will start taking today.
• I will have to follow up with my family doctor later this week to see how I'm progressing and if the dosage of the anti-seizure drug is appropriate.
• I have been scheduled to get a portacath installed early May. It is like a PICC line, but a more advanced, less annoying version. Look up portacath on Google or Google images to see what they are. Why? I'm becoming a pin-cushion for needle injections, and with my thin veins they sometimes burst them... so it's annoying. Also, if I'm going to be seeing doctors for the rest of my (likely short) life then I want to be more comfortable.
• Tomorrow (Tue) I have my regularly scheduled chemotherapy session and visit to the Juravinsky Cancer Center. At which point, we'll show them the CT scan and blood results (we got a copy of each, since Milton and Hamilton hospitals aren't connected for records.)
• I have also been told that I now legally cannot drive. The doctor said he was obligated/required to report the seizure/tumor to the ministry of transportation.

That's about it for now.

Oh, and for goodness sake I must stress WE HAVE NOT GIVEN UP!!!! So stop saying we have (those who are)!!!! We're just planning for the worst, but we haven't given up on hoping for the best! If I had given up, then I WOULD NOT BE HAVING CHEMO! Currently it is the only viable option since it is rampant in my blood stream, so we are pursuing the only option they say should have the most benefit. Stopping to remove a tumor or two (which requires weeks/months prior-to and after surgery of no chemotherapy) would just give the rapidly growing and spreading cancer cells free reign on my system. That would just be stupid, or giving up... WHICH I HAVEN'T! So stop saying I have, I'm sick of it! And as for these reports, and what the doctor says... usually I report the facts only and leave emotion out of it. So it is not ME saying I'm terminal, it is the doctors. Doesn't mean I've given up, just means that I've put my affairs in order (just in case), and we'll see if the doctor is right or wrong.

Shane

Chemo upcoming schedule

Cancer update (2011-04-13):

Received chemo treatment again yesterday (2011-04-12). No symptoms yet. I am starting to loose some facial hair though, so I'll be shaving it off soon to reduce hair debris around the house. Weight stable for two weeks at 52.3 kg (~115 lbs) according to hospital scales. They reduced the treatment dosage amount for this next round of chemo as they want me to go the full 3 weeks this time, not stop due to reduced white blood cell count again at the 3rd week.

This was the first of 3 new weeks of treatment. Then I'll have a week off, then 3 more weeks of treatment. Making a total of 3 "rounds" of 3 week treatments, 1 round is complete, I'm in round 2 and round 3 is after the next break. So 9 weeks in total, 8 for me because I had a week off for low white blood cells. Then (6 weeks or so from now) they plan to CT scan me again to see how the tumors have responded to the treatment.

I have no other news to report. Other than I'm getting more exercise by walking more. My quads hurt as a result. Fast walking to keep up with my 7 year old on his new (used) bike is impossible (I'd have to have run or fast jogged), so it was quite a work out for an hour or so.

-- Shane

2011-04-08 lab results

Talked to the doctor today (Fri April 8th) and got lab results back from this morning's blood test.

White blood cells are up from last week Tuesday's low count. Up enough that this week I could have done chemo; so I should be good to go for next week's scheduled chemo on Tue. I was warned though that overall my count is still low. Low enough that I should avoid swimming in a public pool with my children (supervise is ok, but stay out of the pool full of germs...)

Nothing else to report. I'm feeling ok. Not super, but ok. I'm closing in on 114 lbs again. (dipped down to 111 for a while).

-- Shane

Quarentined -- Low white blood cell count

"Shane Boyce's Notes" blog update:

Chemo is working too well at killing my internal cells. I had a low white blood cell count this morning so this week's chemo was cancelled. A borderline count is "1.5" I was down at "1.0" (This may be referring to my neutrophil count and not my total white blood cell count. I don't have the printout to compare, only my memory of what the pharmacist told me.). Last week was "1.51" or near there so they treated me anyway. But this week's 1.0 was too low. So I have this week off.

Next week was a regularly scheduled "break" so I won't be receiving chemo next week either. The week after that treatment will continue as normal (provided my counts are recovered). So treatment will continue two Tuesdays from today (Mar 29th is today).

I continue to have no symptoms attributable to the chemotherapy. Most are still post-surgery symptoms (digestive problems and occasional migraine) and maybe extra fatigue from having tumors in my liver. That's all.

Here's a web page that talks about blood cells and counts. I'm not sure how these numbers relate to the "1.5" and "1.0" above, but it is still an interesting read.

• The Complete Blood Count: A Guide for Patients with Cancer

Regards,
Shane Boyce

Stretched

Well, I'm stretched... I was fine until my nap (around 3pm) after waking at 6pm now my throat hurts. They must have had me on some powerful pain killers after my procedure for it to last until 3pm.

So now I'm definitely on soft foods until this eases up a bit. Thanks to Kaye's mom, Ming, for making lots of rice porridge (aka congee or juk [Cantonese]).

Shane

2nd Chemo treatment - status

Well, yesterday I had my 2nd injection of the chemo drug "PACLITAXEL" aka (brand name=Taxol).

So far, no nausea from either injection. Yay! Symptoms only include (so far) an increase in migraines and possibly some side pain. But the migraines are likely due to overeating or "rough" food eating that both irritate my surgical region between my stomach to esophagus. When this area is irritated, I get radiating pain that overloads my head. Relief of the local throat pain also removes the migraine symptoms, so I know the two are related.

To try to solve the irritation of the throat region by "rough" foods and food getting stuck. I have scheduled a throat stretch for this Friday, March 26th. It is for 7:15 am in the morning, so I'm looking for someone who can get my kids off to school in the morning since we'll have to leave at 6:15am to make the appointment. I'll phone mom and dad to see if they can do it.

The more common symptoms of paclitaxel include:

• signs of infection / fever, chills, cough --> no symptoms yet
• Low white blood cell count --> Yes. My blood work yesterday suggested my white blood cell count is low. But was high enough to proceed with a 2nd dose of the drug. So the drug is working in my system, just luckily without the nasty side effects of my last 3 rounds of chemo drugs.
• Numbness and tingling in hands and feet --> Yes. I have this in my feet, but I've had this since the first round of chemo in the spring of 2010. It has never gone away (permanent nerve damage).
• Muscle or joint pain --> No. I'm not sure if I have this. If I do, it is in the same area as my rib displacement from July 2010's surgery. As such, it is hard to tell if it is new pain, or old tissue damage complaining.
• Nausea and vomiting --> not yet.
• Shortness of breath, flushing of face --> No. I did get short of breath from the excertion of putting out the garbage and recycling last night. But some of those containers weighted > 40 lbs so I think it is to be expected.
• Hair thinning or hair loss --> not yet.

Hopefully this answers some of the more common questions I've been asked lately.

-- Shane

Options? Few.

 After the doctor's visit on Thu, it seems like my options are few.

Chemo is really my only option right now. All other possible options require me to be free of chemo and "stable" for 2-6 months. At the aggressive growth rate of my current tumors, if I left them alone that long then they would probably easily  move to my lungs, and/or bones and/or brain. So I'm not going to leave them alone and will continue to attack them with chemo.

As for the other treatments, most I'm not eligible for anyway. I don't have liver cancer, which is what the liver radiation treatments are geared towards. I have esophageal cancer that has moved through my blood stream into my liver (and may continue on to other organs). So the "liver cancer" treatments aren't considered for my case. It is the pick a dandelion by the stem instead of the roots argument. With the cancer free in my blood, they cannot stop to pick the dandelion, because the roots will spread everywhere else. They have tried that in the past, and they have found that the deterioration of the patient tends to happen very quickly when the stop to treat the symptoms instead of the root cause of the tumors (like 3 months lifespan fast...). So they want to give me more time and are attempting to kill the root cause and will deal with the symptom (individual tumors) if given some breathing room later.

The only way they would stop the chemo to try something else would be if I was to become part of an experimental project, but they aren't aware of any projects for people in my unique position in Ontario right now. And then there is the fact I'd have to be off chemo and "stable" for months just like everything else.

So for now, I just have to hope that the chemo works, has an effect on the tumors that are visible (indicating that the chemo works for my "esophageal" type of cancer). Then with the tumors "under control" I may be a candidate for something else. But not unless that happens. If this chemo doesn't have an effect, then they have to try another chemo, because then I'm not under control and not stable enough for anything else. If the chemo doesn't work, then the tumors risk also becoming larger than they can do radio surgery on (something usually reserved for true liver cancer or colon cancer, so they aren't really considering it for me). Radio surgery has a limit of 3 cm tumor width as after that the dose of radiation gets too high (rises with size of tumor).

So... here's hoping the chemo works. Not much else to put my hopes on at the moment. Except my body learning how to fight the cancer itself... ya, not likely.

Having said that, I'm going to enjoy the gathering tonight with my family!

Shane

Wed: 1st day after new chemo

Wed Mar 16th: No noticable symptoms yet. Unless you count the fact I slept for 10 hours last night?

Tomorrow we're seeing the doctor to discuss further treatment options (experimental and not) depending on how this chemo round goes. Want to keep my options open.

Shane

Chemo moved to Tue Mar14th.

Nothing to report yet. Chemo was moved from Fri to Tue due to insurance delay. This is an expensive drug, so it takes longer for insurance to approve it.

FYI: 3 moles were removed Thu. What a pain. Not sure if it was worth it. (Yes honey, you were probably right.) ;-)

-- Shane

CT scan results weren't good, some details...

The doctor said more than what I've written, but it was speculation and hypothesis. I've tried to keep this blog entry to facts.



Monday March 7th, the doctors told me that the CT scan found 3 new tumor lesions in my Liver. Surgery isn't an option, nor is organ transplant. Also, my fatigue lately is in line with what people with liver cancer experience.

There were also smaller objects present in the liver that they investigated with an ultra-sound (also on Monday) to see if they were cysts (not related to cancer http://en.wikipedia.org/wiki/Cyst) or more tumors. I don't have the results of the ultra-sound yet.

Since these new tumors did not exist after my surgery and grew during my most recent radiation and chemo treatments, they are assuming that they are resistant to that type of chemo drug. So, they are going to try me on a new type of chemo drug for 2 months to try to control the tumor growth. I'll be starting that treatment this week (likely Friday).

Side note: the ultrasound person stated that the area where the tumors are growing was outside the radiation treatment zone.

They also mentioned that if the new drug stops growth, or even better, causes some shrinkage, that they may consider a (relatively) new treatment called "Radiation Surgery". I found this short description of what that is:

    "Radiation Surgery: A radiation therapy technique that delivers radiation directly to the cancer while sparing healthy tissue. Also called radiosurgery and stereotactic external beam irradiation."

Also known as radiosurgery, here is a more detailed page about it: http://en.wikipedia.org/wiki/Radiosurgery

The doctor seemed hesitant to tell me about the radiation surgery though, so it is possible I'm not currently a candidate, possibly because radiosurgery has a 3 cm tumor size limit. I also think it is expensive to perform (rare isotopes used), so they will want to be more certain it will be beneficial before using it.

-- Shane

CT scan done, now with the mystery moles

First CT scan since Sept. was done this week Thursday Feb 24th. Won't find out the results though until March 7th when I visit the doctor next.

Did find a few "suspicious" moles on me today at the doctors. I went because one was itchy for the first time ever and I thought that strange. The doctor looked me over and found 3 discolored ones they didn't like, so I'm getting them removed (free by OHIP because they are suspicious, not cosmetic) on March 10th. They will then send them to a lab to be biopsyed and checked for cancer.

I hope they find nothing. But I'll be glad to get rid of some of my moles. lol
Unfortunately, they are hidden, unless I'm swimming, so no one will notice them gone. My prominently visible moles will remain, as their color was fine.

Shane

Work went ok, still sick though.

Work on monday went well. I lasted the full day and was able to help with a few problems they were having. Throat cold migrated to my sinuses half way through the day which was annoying. The cold made me feel more tired than I should have felt by the end of the day, so I was glad to relax at home.

I still have the sinus cold, but the throat pain has subsided a little, so that's good.

I took today (Tue) very easy. Stayed in bed for most of the day trying to rid myself of the sinus cold. No luck. So I'll be going to work tomorrow with a Kleenex box. But then I'll have 4 days to recuperate before my next work day (Mon). My family seems to have shaken the cold bug, so hopefully I'll shake it soon as well.

Shane

[Friday Feb 11th] Looking forwards to work.

Family is going through a sore throat phase. I've caught it too it seems. First sickness since the whole cancer thing started. Just before work on Monday too. Great timing.

100 push up progress: Week 1 Day 3 (should have been week 2 day 3, but I've been pacing myself, especially with the snow shoveling of last week): 5 sets, reps = 11,15,9,9,13 = 57 push ups in total. 120 sec between sets.
For those who missed it this is for the web site challenge: http://hundredpushups.com/ .

I'm approaching 115 lbs. I think I'm 114.6, to be precise. So I'm on track. Still averaging a pound or two per week of gain.

Looking forwards to work on Monday, but not if this sore throat continues. Hope it goes away soon.

We don't have much planned for Valentines, but we're planning on taking a weekend off in March for our anniversary. We have a multiple day baby-sitter lined up and everything. Take in a hotel in T.O. and go see the A.G.O. for an East Indian art exhibit and feast.

For Tao's Birthday (which is March 9th) we're planning on having the kids (3 of them) go to a kids indoor play area by themselves (instead of a massive schoolmate crew) and instead have a 2nd party of family at our place as the actual "party". Date to be determined. I'm not going to get too specific with dates on this blog, as it is world readable, and I don't want to invite people to rob us, or crash parties, etc. Kaye will likely send out a proper invite via email or phone (or both) so don't wait for the details to show on this online blog.

Regards,
Shane

114 lbs

Made it to 114 lbs. Still look like a stick, but I'm fleshing out a little.

Eating is becoming easier. Body still doesn't like pepsi or coke, too much sugar.

Had to pause workouts for the week due to snow shoveling.

Return to work confirmed with all parties (work, RBC, doctor, me) as Feb 14th.

• First two weeks: Mon / Wed
• 2nd two weeks: Mon / Wed / Fri
• 3rd two weeks: Mon-Wed / Fri (Thu off)
• 7th week is first full week of 5 work days.

Shane

Return to work day confirmed as Feb 14th.

RBC insurance and my doctor have confirmed I'm good to go for a return to work the week of Feb 14th. I have to call HR at Gennum next week to confirm days I'll be attending with them.

I'm up another pound to 113 lbs now. I'm averaging about a pound increase per week since end of Chemo.

I've also started exercising and have joined something called the 100 push-up training program to assist a partner in BC, Canada (or maybe he's joined it to help give me incentive, but asked the other way around so I wouldn't suspect?)  http://hundredpushups.com/  . The goal is to achieve 100 push-ups in a single go by 6-8 weeks into the program. It may take me longer, as I have to go easy, but I'm currently at 20 in one go without stressing my body too much, so it should be doable. Especially since I'm so light.

Other than pushups, today, my 3rd day of exercise since I began exercising on the 21st of Jan, I managed to do: 50 stride jumps, the 20 push ups of the 100 push up trial, 15 sit ups, 10 leg raises, 10 lunges per leg. I'm not going to complete muscle failure. Just until it starts to get difficult but I still have strength left. I don't want to stress out my body too much yet since it is so soon after Chemo.

Regards,
Shane

Starting to recover...

Kaye says I'm still loosing hair as my head looks more "patchy" than she remembers. She's suggesting I shave it again so it can grow in more evenly.

I'm finally gaining a bit of weight. I was between 108 and 109 lbs for the week or two after the end of chemo, but now I'm finally up 3 lbs to a whopping 111 lbs. ;-)

Still hoping to go back to work some time in Feb. using a graduated return to work schedule. 2 weeks of 2 days per week ... 2 wks of 3 days per wk ... 2 wks of 4 days per wk ... 7th week would be start of full 5 day work week schedule.

-- Shane