Chemo's done.

Yay! Chemo is gone. PICC line is gone! I want to celebrate, but I'm in chemo withdrawl... Maybe next week...

-- Shane

1 week down, 2 weeks of chemo left until I'm DONE!

1 week down, 2 weeks of chemo left until I'm DONE! Wahoo! It's like a countdown to Christmas or something, only a few extra days. I feel excited like the kids. lol

Last round of chemo commences

White blood cell count recovered so they put me back on the triple set of chemo drugs on Friday. I'm struggling to keep food down now (Sat). Woke up puking (pleasant isn't it). I am on anti-nauseants, but it doesn't help when you're nauseated before you get a chance to take them. I guess no more sleeping in for me, I have to keep a set schedule for drug taking.

At least this is the last round. We'll see how it goes.

Shane

I'm worse than I thought...

I'm off chemo for a week. When I went in for lab work and bottle renewal today, they said my "nutrifil" count (spelling?), aka white blood cell count was too low to continue.

So I am in a weakened state for resistance to all infections, and therefore under quaranteen until I get more healthy. So no big gatherings for me for a week. Cave dwelling it shall be.

Shane

A couple of weeks in - status

Well, I lost 8 lbs for an all time low of 111 lbs. I've managed to gain 2 lbs back in the last few days so I'm up to 113 lbs now. I was at 119 lbs when this round started.

Nausea is not as bad as I remember the May to June rounds being. Maybe because I'm not having to take the daily pills, I'm on the bottle through PICC line instead. They call it ECF instead of ECX regiment. The E and C are still injected, but I'm having the F bottle drug instead of the pill X drug. This saves on nausea from swallowing the pill and the eventual throwing up the pills. So it should be more effective as well since there is nothing to throw up with the bottle direct to my blood stream.

I'm eating more solid foods. It sometimes hurts my throat, or gets stuck, but I've discovered I'll probably have to live with that for the rest of my life. If I don't have food test the limits of my throat now and then, then the opening will begin to close again and I'll have to keep going in for stretching. With these "self" stretching experiences, I excercise the throat opening and encourage it to stay larger without visiting the hospital once a month for a manual stretch. I don't think I'll need to go in for a stretch this month (first month I didn't) as a result of eating less mushy foods. It just means requiring I chew food really well, and that I make sure I don't eat without a drink near by in case I need to flush some food through.

I find it ironic that I have to live with the symptom that first led me to find out I had cancer for the rest of my life, rather than all of this removing that initial symptom. (Food catching in my throat to stomach valve led me to investigate.)

Overall I'm good. Just very tired. I do retch periodically, but it seems less from nausea than from intestinal irritation from the chemo making my mucus membranes sensitive.

Shane Boyce

Fri Nov 19th - 6 weeks of chemo starts at 9am

Here we go again.

I gained 5 pounds in last two weeks. So they said I'm good to go for tomorrow to start 3 weeks of Chemo. I'll be doing almost the same thing as I did from May to June, but I opted out of the pills this time due to the risk of pills getting caught in my smaller throat hole. So I'll be doing 2 x 4 hour injections (one tomorrow, then a 2nd in 3 weeks). Then I'll be given the baby bottle for daily dosing which will require weekly replacement. In total, 6 trips to the hospital. Sure beats the daily injection option (whew!).

So I'll post tomorrow night how things are going. I might skip posting Sat because I expect to be incredibly nauseated. I tend to loose 5 lbs in the first 4 days after these mega dose 4 hour injections, so this will be interesting.

Shane

2 more weeks to heal before next 6 week round of chemo.

Doc says I'm not recovered enough yet from radiation to start chemo. They are going to give me another 2 weeks to try to fatten up a bit before they start me on it.

They also say it isn't uncommon that I'm not gaining weight yet. I'm burning calories with internal and external repairs right now (I'm shedding skin like crazy! It snows daily when I change my shirt.)

Shane

Doom approaches...?

I'm overwhealmed by the support and help of my family as well as my friends. You are all great!

However, I'm REALLY not looking forward to starting Chemotherapy again this coming Thu Nov 4th. That's when I meet with the doctor to see if I'm recovered enough from chemo/radiation to continue.

Weight wise: I'm hovering between 113 and 115, averaging 114 most days. I'm not gaining, but I'm not losing either. Still having issues with some foods, so eating has to be very selective and I'm still doing trial and error to see what works, what doesn't.

Shane

1 week and a bit "free"

Detox still going on, but seems to be slowing. I've managed to raise my weight from an all time low of 112 lbs to a stable (for a couple of days) 115 lbs. I'm working on increasing that, but it is hard to eat constantly.

Retching is going down, partly because I'm avoiding the foods that set me off so much and found some more gentle foods for my system. Amy soups go down well (all organic, no additives, MSG or sugar), like lentil and split pea flavours.

Still taking long daytime naps, I guess that's part of detox.

Shane

FYI: fighting a slight fever

I've been staying in bed most of the time since my "last day" of radiation / chemo. I'm fighting cold chills. Thermometer only reads high 36's (sometimes 37) so not much of a fever, but still not 36.0 degrees C either.

It means appetite is down, but still have to have fluids, lots. So I'll be using up the last of the frozen shake "cubes" Debbie made for me over the next few days (still many left).

Note: If I'm in the middle of cold chills, I probably won't get up to answer the phone. Just leave a message, I'll get it eventually.

-- Shane

Last week of chemo + radiation

I can't wait. I'm tired more often. Sleeping more often. And apparently retching more often. I'm bouncing between 117 and 120 lbs. Only thing that seems to get me to gain weight is taco's from taco bell. I can't get near most other foods that would help me gain weight (retching + stomach pain = avoidance). I'm still eating lots of healthy foods and smoothies (as they don't have stomach pain), but they maintain my weight, not increase it. (PS: No more food tips please.)

Tue is my last day, then I get a 3 week break, then pure chemo for 6 to 9 weeks.

With the fatigue, sleeping and constant retching. I've not been socializing as much as I used too (or doing much of anything else either).

Shane

What I can do?

To answer some questions:

1. Yes, I physically can eat more often than I do.
2. It isn't what foods I'm putting in, it is how often and how much.

Here's why:

1. I have a huge sore in my throat that hurts like the dickens if ANYTHING goes past it. Water included.
2. I need to have my throat enlarged again, so it is back to baby food, so if food isn't pre-prepared (whipped) then I'm very hesitant to eat it as it gets stuck (and hurts, with or without the sore that is in the same place!)
3. It seems that practically every food I consume ends up hurting my small intestines. This combined with the chemotherapy results in my throwing up after every meal. This has lead to an aversion to many, many foods I would normally consume in mass quantities and can't even look at them now.
4. I have no appetite. The desire to eat plays a large part in how much and how often you eat. The steroid provided to me should help with that this week. Also, removal of the nauseating chemo pump should also remove many aversions.

So hopefully with the proper diet suggestions I have from all my friends and family (no need to provide any more, I'm overloaded). Then I just need to eat MORE. That is all.

Note: one of the reasons I have to eat more is that I'm not eating fast food any longer. No tacos, no chicken wings, no hambergers and fries. Therefore I have to eat more because the calories of what I am eating are less. Health food isn't all it is cracked up to be for someone like me that can't eat much.

Shane

Wasn't enough ... still losing. Talked to doctors.

Shakes weren't enough. I'm down 2 lbs to 120 lbs. My weight when I was 18 entering University. Talk about a time warp!

Doctor agrees I'm losing too much weight. So, I'm off Chemotherapy this week (I'm not going to miss that for sure!) Radiation will continue.

I've also been given some prescription steroids to increase appetite and reduce nausea for this week. If this doesn't work, then I will probably be stuck with a feeding tube directly into my intestines through my side (don't want that!)

Shane

Still "losing" ... Kaye wants me to stop miss-spelling the word.

Smoothies going down. Taste ok, some better than others. They make me more hungry after I've had them, like I'm still empty. Even though they claim to have a half day's worth of calories per dosage. Odd.

Jeff / Cindy's tomato sauce tastes great, but I can't eat it often (too acidic) as my mucus membranes are starting to erode due to the radiation & chemo. Already I have a sore at the back of my throat that makes it hurt just to drink water. More salt water rinses are in order...

Shane

Still loosing...

Chemo through PICC line is unforgiving. More nausea & vomiting (well, it tries anyway).

I'm down to 122 lbs. Not cool.

Attempting to eat more, but apparently I think my "mucus membranes" of my throat are starting to give way (so here comes gargling with salt water again). So my throat now hurts too.

My sister's coming for a visit today with many shake / smoothie recipies we're going to try.  I also just picked up a blender. So hopefully the shakes will be more palatable than the ensure plus I'm supposed to be drinking (but haven't been). I also hope the natural sugar content will be lower than the pear/lichee juice I just bought. Sugars are still a diarrhea curse (again, another cause to loose weight).

This is really hard to balance!

I've been sleeping 11 hour days too, from fatigue. That's cutting into the number of meals I take in. I may have to have Kaye wake me for a mid-nap meal then keep sleeping. Just to keep my weight stable.

I'm tired.

Shane

PICC line is annoying.

I'm not enjoying the PICC line...

It limits range of motion and is a constant irritant (sleeping and awake).

I also got the edge of the included tape a bit wet my first shower with it (after attempting to cover the area with a large zip-lock bag and some elastics...) which ruined its stickiness. The tape I placed over the edge to keep it flat is not "flexible" like my skin and the first tape, so it limits motion even more as it pulls my skin.

Can't wait for Tuesday for them to replace the bandaging and get a proper tape on it again.

Shane

Added Pictures.

Blog now has pictures.

Two parts:

1. Latest picture image (large image)
2. Slideshow of all images since before surgery to now. The slideshow can be paused, forward/backwords, or you can click on an image to see it large with a descriptive caption of what you are seeing. This also takes you to the Picasa web album that is hosting the images and allows a great deal more that can be done with the images.

Shane

Summer Fun - baseball

Kaye, her dad, and I played baseball today! I batted, Dale was infield catching, Kaye was outfield catching. Then when I ran out of juice, they played catch together. Kids played in the splash pad, Kaye's mom sat on the bench and watched. Good outing overall.

I lasted longer than I thought I would, and only missed a few balls. Letting gravity do the work mostly, so no home runs for me. But was able to get the ball to Kaye in the outfield 1 out of every 2 tries (if her dad let it past). So it was a good thing my left side was fine. The right side was just there to direct the bat.

So we had fun. :-)
Shane

Stretched throat is helping.

All around good news:

• Throat stretching means I can eat "normally" and I'm not restricted to baby food. Had tacos and burgers and fries in the last few days. Hopefully they will help me stop loosing weight (down to 126 lbs).
• Small instestines have resined themselves to the fact that they have to assume the role of the stomach and digest food for me. So the pain is quite tollerable now.
• I haven't used pain killer to go to sleep (because of stomach or rib) in more days than I've kept track of now. However, during the day in periods of high activity, or consumption of stupid food choices (refined sugar still gives me cramps / the runs and hurts) I still occasionally have to have a pain dose.
• I've been tattooed for the radiation therapy in Sept. But that means I can't gain much weight (or loose much) so the tattoo marks stay as relevant positioning tools.

Radiation questions:

• I'm not having radioactive materials placed inside me that attack tumors. I'm being scanned by rays. So that means I will NOT be radioactive to others. So hugs are still safe. :-)
• Radiation machine will circle me and target (like a laser printer for a computer) the areas requested by the doctors from multiple angles. So it is going to be very selective what they "target".

Regards,
Shane

Dr. Miller follow-up

Dr. Miller considers the surgery a success. No complications, tumor fully removed, sample of lymph nodes taken. No problem.

However, I will have to get a few endoscopy visits to enlarge / stretch my stomach/esophagus opening as the scarring has made the swallow hole very small. It can currently only fit a large green pea (Advil extra strength migraine gel pill got stuck, had to force through and there was an audible pop, so that's apparently my limit).

Other than that, X-Ray shows stomach "tube" is in the correct location (follows my spine a bit on my right side) between my heart and lungs. All other parts of x-ray also look good, no lung problems etc.

He estimates my cough is due to constriction on my lungs because of the stomach, also other nerve irritation, but no fluid in the lungs, no collapsed lungs, just irritation. So my body has to adjust to everything. Until then I have to resist the urge to cough and get used to a restricted air flow (that's why I feel out of breath so easy!)

Great...

Shane

Bad news - 3 more months of treatments

Ok, met with the triple team of doctors (chemo, radiation, surgical) at the Juravinski Cancer Center (aka JCC) in Hamilton yesterday. I'm meeting with the surgeon from St. Josephs (Dr. Miller) tomorrow.

The JCC team says the following:

Pros:

• Cancer tumor surgery removal was "complete" and successful. Size was about that of a large egg. 3x3cm round for most of it, with largest measurement around 4.6cm. (yay that is gone!)
• Cancer was not present at the top of the esophagus removed, and not present at the bottom of the stomach removed. So cancer had not spread as far as surgery was performed (yay).
• Cancer had not spread up the nerve sheaths that trigger digestive fluids in the stomach, so risk of cancer spreading up the nerves to other areas of the body is negative. (yay)
• Cancer tumor did not break free of the stomach/esophagus lining. The stomach has 4 layers: mucas, the one above mucas (forget its name), muscle tissue then a final cell membrane. Tumor had breached the mucas and 2nd lining, but was just starting to touch the muscle lining. So the tumor was contained to the surgical area and therefore risk of missing some of it was negative. (Yay).

Cons:

• Lymph nodes sampled around esophagus, stomach, liver tested positive for cancer cells (not full tumors, just microscopic cells).
• 13 nodes sampled, 5 tested positive for cancer cells.
• That means roughly a 20% chance of those cells developing into tumors later in my life

Solution:

• To reduce the 20% chance of reacurrance down to 10%, it is recommended that a combination of radiation treatment and chemotherapy be done.
• Sep 7th they will start radiation daily for 5 weeks.
• After that, I will go through the same chemo as last time for a couple of months.

Radiation Info:

Radiation is quick, just like a regular X-Ray, so appointment will be 10-15 minutes long, tops. Travel will be the killer. However, they have shuttle service as far as Toronto to Hamilton and already have some Milton clients. So I'll hitch a daily ride with them to save on fuel, ETR407 and parking fees.

The intestines don't allow more than 45 rad units before damage, but they want to pump 65 rad units into my affected areas. So I will be getting a chemo drug that will enhance radiation sensitivity in the lymph nodes so that a 45 rad unit dosage will do 65 rad units worth of attack therefore not damaging the intestines (which won't increase in sensitivity and will only receive the 45 dosage level).

Side effects will be general fatigue, possible redness (like sunburn) in folds of the skin only over time. Side effect of chemo drug *may* be inflamed mucus membrane from my mouth all the way to my anus (let's hope I don't get that side effect).

Last week of August they will compare old CT scans of my organ locations to a new CT scan of current organ locations and apply tattoos to my skin to indicate where my the radiation is to be sent, and at what dosage level. After that, I will not be permitted to gain or loose weight at all, as that can stretch, shrink my skin and therefore the tattoo locations. (That will be a challenge.) I will have the help of a dietitian but if I have difficulties, then they will insert a feeding tube into my stomach and directly influence my eating habits.

Chemo Info:

Chemo will be the same as last time, but because my swallowing hole is too small for pills now because of the surgical scars, they will attach a pick line to me and a pump that looks like a baby bottle. The bottle pump will slowly pump the chemo into me 24/7 and will only need to be replaced / flushed once per week.

It does mean that daily activities and showering are complicated by the pick line and the bottle though. But it also means fewer "missed" dosages due to nausea or vomiting or just plain old forgetting to take the pills.

Chemo treatment will take me into November. So with a few months of recovery, it looks like I won't be back to work until 2011 some time.

Regards,
Shane

Recovering some more

Rib is getting better. After many chiro visits it is almost back where it is supposed to be. I am taking the tylenol 2's less than before. Main concern is now getting stomach to eat more normal food. Anything solid still hurts like hell to eat, but so long as it is chewed REALLY well and is accompanied by some sort of liquid it is possible to eat solid foods now. I'm still sticking to mostly soups.

Kaye overboiled some beef bones for a whole day to the point that the water had to be replaced a few times  leaving a gelatinous calcium, fat and hopefully some other goodness rich goo from the bones and bone marrow. I've been adding that to my soups and I have actually gained almost a pound back. A few days ago I weighed in at 128.8 lbs. Up a bit from 5 days before that.

I can sleep a whole night now without pain meds. Most reason to take them now is if I'm eating whole foods (pain in the abdomen) or if I'm going to be taking a really long walk or things like supervise Nia's BD party today at "Skedaddle kids" or do a few (slow motion) kata at the AMA karate demo at the Milton Fairgrounds yesterday. I picked up some sun from the Fairgrounds on my knees and shins (from sitting on a lawn chair), stings a bit, but should be ok by tonight.

Overall, things are looking up.

Doctor Visits this week:

• Mon/Wed/Fri visits to Chriopractor still planned. He isn't in the following week, so this will have to last me.
• Oncologist (Chemo doctor) appointment on Monday 16th. She better say I'm clear to NOT do another round of chemo. The alternative would really suck, as I have no fat left!
• Surgeon (Dr Miller) appointment on Wed. 18th.

After visiting both doctors, I'll find out if I'll have to extend to long term disability or if I'll be able to go back to work the beginning of September. Short term disability runs out Aug 27th (ish).

Shane

Rib and eating

Chiro is helping the rib. I can sleep a whole night now. Still hurts, but is more bearable.

Food is a challenge. Some foods hurt after I eat them (like cramps). I still can't eat a whole cup of something at one sitting. I think I'm slowing my weight loss by eating higher calorie foods (haven't checked in a few days).

Shane

Rib + Chiro

I've seen the Chiro twice now. Wed and Friday mornings.

He mostly adjusted my neck and areas around the rib (that is out of place). This is correcting my improper sitting / sleeping postures due to my rib pain. So I now feel more "straight" or "upright" when walking / sleeping / sitting.

He must also be doing something right with the rib. He's only been doing micro-adjustments with something called a "chiropractic activator" instead of large / gross movements manually by hand. The micro-adjustments will take a number of adjustments for me to really notice a huge difference, but already, after two adjustments I've been able to lie on that side (for 5 minutes) without huge discomfort. So something is improved.

Still lots of pain around rib though. Also, breathing / coughing problem due to pain in rib is still there. My abs are getting really tight / sore from the workouts.

Other than that, all is well. Unless you count the many days of diarrhea... I just (Fri 5pm) took an Imodium to see if I can halt weight loss due to lack of food digestion. I'm down to 128 lbs (from 155 before chemo and 135 at hospital release time). 1991 University freshmen weight was 120 lbs... I don't want to hit that again, I was a walking stick.

Shane

What's with the rib!?

Ok, it isn't nerve damage, looks like I have a rib really out of place, and its a long weekend... I'm definitely going to a chiropractor on Tuesday!

My pain is more focussed now, instead of just everywhere, so I've pinpointed the problem.

Shane

Recovery at home

I'm still tired, lazy and don't want to type much. Good thing I type quickly.

For people who aren't on facebook, here's a couple of posts I did there:

• 
  

  Long time left to recover, 3 sets of incisions /w staple marks, 2 tube marks that look like open gaping gun bullet holes, a few tiny holes from injections, IV, and arterial catheters, epidural needle nerve damage. You know, the usual. ;-)

• lol. The thing that gets me is I don't seem to be growing back any pre-chemo hair yet... just growing long hairs that survived chemo. So pretty sparse up there...

Some additional hospital humour / stories:

• "Uh, did you know you're flashing people behind you?" (Nurse to me)
• Pulling out of nose tube (slowly), "Ok, that's a weird feeling, ow ow!", nurse stops, just makes it hurt more, "don't stop! keep pulling!", finish getting out tube. "whew! That wasn't fun."
• Nose tube caused a friction burn over the 5 days with the tape holding it too my nose, and some bloody boogers. I managed to get the nurse to replace the bandage after a bath revealed that there was some boogers under it. She replaced it with a see-through one, and it revealed that my left nostral still had a huge black mark under it, so I tried to replace the bandage myself (they had left some behind, silly nurses). So, I'd seen them rip the bandage multiple times by hand, and had done it myself too, so I figured, ok, I can do this... get the bandage off my nose, but it is still wrapped around the tube... and it won't rip (too moist from washings, sweat, other?) So only thing I can find sharp in the room is a safety pin, try to rip it with the safety pin... no luck. So now I have this big bandage hanging from the tube in my nose like a large booger. Great. On top of that, since it was off, I attempted to clean it... turns out it was massive scar / scab tissue that (even of this blog) isn't going anywhere soon. So, I attached a new bandage anyway, leaving the old one dangling (I had to put on a new one, as I felt the tube going in/out on its own!) At this point I'd done enough things to embarrass or anger my nurse, that I didn't want to call her (strange, I can't remember the other things...) so I took a stroll into the quad and looked for some scissors. Found another nurse, younger, more forgiving looking, and said, "I have a little problem" as I proceeded to blow upwards with my mouth causing the band-aid to blow in the wind. She laughed and asked who my nurse was. I refused to say and convinced her to just help me out. She cut off the first dangling one and applied a newer one (replacing my makeshift job) She did a much better job than I did.
• One of my room mates and I weren't that great for sleeping. I would start coughing or clearing my throat and his drugs would interpret that in his dreams as a confirmation of some question and he'd go "a-huh, yes", each time I did something like that, then he'd go into some sort of dream sequence that always ended up with him talking about if 'what time is it", "are the girls here yet" followed by him starting to remove medical stuff and attempting to dress and leave the hospital. I didn't catch onto the cause until the 3rd time, at which point any time he started with the dream sequence questions I'd have to tell him, "go back to sleep, its just a dream, we're still at St. Joe's hospital and it is 3am (for example)". His coughs and stuff cept me up, and I kept waking up hourly because my drugs caused me to break into a deep sweat every hour and then I'd have to reposition, or change my gown/sheets  (which would wake him up). Worst nights ever!

-- Shane

Shane's HOME!!!

Shane was discharged today around 4:30 pm.  He got all of his staples and IV sites removed.  He's moving around okay, but is extremely tired now.  Currently resting in bed.  He will probably update the next blog.  So happy that he's home!

Shane's Post-op day 6

Hi ho, everybody.  This is still Kaye subbing in for Shane.  I expect that everybody's wondering how Shane is doing so far.  Thanks for all the get well soon wishes.  

From post-op day 3 to post-op day 5, Shane grew increasingly grumpy from being attached to so many tubes and drains and suction machines and the incessant beeping and whistling sounds emitting from various sources.  Oh, yeah, and the pain that he had to endure 24 hours around the clock.  I really couldn't blame him for being irritated, but by day 5 (of visiting Mr. Grumpy-pants instead of  my loving sweet hubby), I had fantasies of kicking his urinary catheter bag across the room and watching it sproing back like a bungee cord.   (Bad, Kaye, bad, bad, Kaye).

But starting yesterday, Shane had his various tubes and drains removed - very unpleasant experiences, but Shane became happier and less stressed as each one was progressively yanked out of him.  He had his nasogastric tube (that's the tube going past his nose into his stomach for drainage) removed this morning.  He wasn't allowed to eat or drink anything until after his barium swallow test (basically, an x-ray that checks for any leakage at the new joined connections of his stomach and where his old esophagus used to be).  Shane said that whatever the radiologists gave him to swallow tasted horrible.  He told them, "Man, I haven't had anything to eat or drink for 7 days and the first thing you give me is THIS YUCKY?!!"  The radiologists said that nothing leaked, so, yay, Shane can start on a clear fluid diet, then, a full fluid diet, then, a soft diet probably before he gets discharged from the hospital. 

The chest and neck tubes surprised Shane and me.  We weren't expecting the lengths that had been buried into Shane's  body.  (ew, gross!)  Shane had to have another x-ray done of his chest after the tubes were removed to make sure that nothing was out of place.  The porter, Ian, was really friendly and nice (such a sweet young man!), despite the pierced nostrils and him telling us of his bad experience with morphine when he experimented with various drugs which was how he ended up in prison.  But he's much better now.

Speaking of morphine, Shane is still hooked up to a continuous IV morphine drip and "pain pump".  He still complains of pain, but the removal of all of the tubes and drains really diminished his suffering by ALOT.  Unfortunately, he still goes "woo hoo" due to the side effects.  I felt so sorry for Jen, the dietician, because she really looked like she was lost when she tried to talk about dietary management with Shane.  Shane was rambling nonsensically on and off topic (which reminded me of "Rose Nylund" from the Golden Girls, when she would tell profoundly strange stories about her hometown).  Shane's diet management has always been a sore point in our marriage.  We unfortunately bickered in front of Jen.  She later asked us how long we have been married (11 years!), because she only got married last year.  Hope we didn't scare her.

Anyhow, Shane still looks pretty good.  All the drains and tubes are out (with the exception of his peripheral and central IV sites).  He's doing his own sponge bathing (thank goodness).  He's able to walk laps around the unit floor and can climb up the stairs.  His incisions are clean and shows no signs of infection.  The incisions are held together with staples, so he looks like Frankenstein.  His vital signs are stable.  

Shane might be discharged by tomorrow afternoon. Who knows?  I'm hoping that he won't be, because I really want to see how his new stomach and sewn up connections tolerates ingestion of food.  I guess we'll find out tomorrow. 

Shane's post-op day 2

Hi, everybody.  It's Kaye, again.  I'll be so glad when Shane can focus his eyes without blurred vision.  Then, he can take over his blog again. 

I saw Shane again on Friday afternoon at 2:15 pm. He was transferred from Step Down to the Chest unit on the same floor.  His room is 4134, bed 2.  His bed is right next to window.  It's down the hallway right next to the Step Down unit.

Shane looked exhausted today. Apparently, before he was transferred, he walked across the Step Down unit with the physiotherapist.  He said that he had to use sanchin dachi (hourglass stance from karate)  in order to keep his balance.  He leaned on his IV pole and the physiotherapist's arm as he made very slow progress.  Then he sat in his chair for 1 1/2 hours.  After all of that exercise, I guess the health care team deemed him well enough to survive and kicked him out of Step Down to free up his bed.  Do I sound bitter?  Nah.....

Anyhow, his surgeon saw him today and gave report to the gaggle of attending physicians that will take over his patient case load when he goes off on his 3 week vacation.  Unfortunately, Shane couldn't understand doctor lingo and I wasn't present to translate.  Shane did say that his epidural wasn't working so they'll just rely on his IV morphine continuous drip and "pain pump"  to control his pain.  So he still has an epidural line stuck in his back - not hooked up.  But his nurse won't be able to remove it until his blood clot time decreases.  Shane is still experiencing the after effects of all that injected heparin (blood thinner to prevent clots)  so if they take something out, he'll just keep bleeding.  Anyway, since they're now using the morphine solely for pain management, Shane was more spaced out than usual.  I offered him something to read, but Shane can't focus his vision very well right now.  So forget about giving him reading material for a while yet.

Shane still can't eat or drink, but he's allowed to have ice chips periodically to moisten his mouth and to help dilute all the mucus caused by the nasogastric tube.  That's the drainage tube that goes through his nose and into his "new" stomach.  Shane spent most of the day dozing and resting.  Not surprised, considering all of physical exercise he did in the morning.

Shane is in a semi-private room that he shares with another patient: Ed Smith.  Ed seems like a nice guy.  He has difficulty staying upright on his own and tends to flop over in uncomfortable positions in his bed.  He doesn't like bothering the nurses so he never uses his call bell.  So if you're visiting and Ed's flopping over, just press the call bell and get a nurse for him.  Nobody should be in any unnecessary discomfort in the hospital and nurses are supposed to be there to help the patients get better.

When I was visiting, Shane's day shift nurse was Ken, this big barrel of a tattooed Scottish man.  I wasn't sure who he was when he clomped through the door and started checking Shane out.  Shane said,  "And you are...??"  "I'm Ken, your nurse.  And I'll be taking care of your sponge bath."  (in a Scottish accent, I'm assuming that because I overheard him talking to Ed that he follows the soccer team in Glasgow).  Thankfully, Ken decided to delegate the sponge bathing to Rose, a student nurse.  Rose looked a bit nervous and unsure of what she was doing.  So I helped out with cleaning Shane up.  Later, Shane asked me if I cleaned him below the waist, because it didn't feel as clean as it should be.  Huh.  Well, I didn't. I guess it was Rose.

Shane's surgery and post-op status

Hi, everybody.  This is Kaye subbing in for Shane.  Shane wanted me to update the blog and to tell everyone how he's doing.   Thanks for all the best wishes, prayers and good thoughts!  Shane & I are lucky to have such a great support network.  We could feel all of the positive energy directed at us!

On the morning of the surgery, he was calm and full of the equanimity that I should have been practising.  Shane even drove to the hospital in Hamilton.  He was still feeling the "Quan"  in the pre-op room (most aptly called the "Kiss and Cry") before he was wheeled out. 

Shane's surgery started at 8 am on Wednesday and lasted about 5 hours (from 8am to 1pm).  His surgeon came out to see me after the surgery. He was pleased with how the operation went and told me Shane was waiting in the recovery room.  I wasn't able to see Shane until he was moved into the Step Down Unit around 5 pm.  He was very groggy from the after effects of the general anaesthetic.  It was difficult to carry a conversation with him, because he kept on dozing off mid-sentence.  But, his condition was stable and he was able to start doing his deep breathing and coughing exercises and his foot and leg exercises (to prevent post surgical complications).  He was in a lot of pain despite having his epidural and a morphine "pain pump". 

I went to see Shane again the next day around 11:30 am. His bed is right next to the nurses' station.  I was glad about that, because, at my first glance of all the tubes and drains attached to him, I knew that he was going to require a lot of care and monitoring for the next 48 hours.  Shane was conscious and lucid.  He was able to talk to me, but tired very easily.  His condition was stable and his skin colour was pink and warm to the touch.  He looked very good post op, considering that it was 24 hours since his surgery.  Shane still felt a lot of pain, especially on his incision in his right side.  But he was able to tolerate the pain due to his epidural and use of his pain pump.  His nurse said that he won't have any increase of dosage for the pain meds.   Otherwise he'll become too disoriented to sit or stand and they want Shane to be as ambulatory as soon as possible.  He complained of difficulty in focusing his eyes and total disorientation re: the passing of time.  Sometimes he would feel that 5 mins felt like an half hour and vice versa.  These are probably side effects from all of the pain medication. He was able to sit in the chair for about 5 mins, while they changed his bedsheets.  Overall, I'm really happy about Shane's condition after the surgery.  My only concerns are post op infection and his kidneys.  But the nurses are pumping him full of IV antibiotics to prevent infection and IV fluids to encourage his urine output.  He has about 3 tubes draining secretions from various incisions on his body, so I'm not surprised about Shane requiring more fluid intake than usual.  He has all of the tubes that we talked about 2 blogs ago.  He has a 5-6 inch incision at the front of his abdomen.  He has another 4-5 inch incision on his upper right side.  He has another 2-3 inch incision on the left side of his neck.  Having all of those tubes and drains is kind of messy, so if you're squeamish about body secretions and fluids, it might be better to visit later. 

Shane wants me to tell everybody that he feels positive about the outcome of the surgery.   I'm just so happy to see him alive and kicking around still.

The Step Down Unit is very strict about visitors and visiting hours.  I almost got kicked out, even though I'm his wife! And they don't allow children under 12, so our kids won't be able to see Shane right now.  So apart from Shane's family, please refrain from visiting Shane until he's transferred out of Step Down and into the Chest unit.  Both units are at St. Joseph Health Care Centre, Juravinski Tower, 4th floor.  Visiting hours are from 2pm - 8pm and restricted to 1 visitor at a time (Step Down Unit);  2 visitors at a time (Chest Unit).

Again, thanks to everyone for being so supportive and helping out with child care.  Esp. thanks to Charlene for her generosity in letting me stay at her home - so I could be near Shane during his hospitalization.

MRI ... Clean. YAY!!

Nothing found on the MRI. Yay!  So proceeding with surgery for tomorrow.

I am SOOO glad that Milton pharmacies don't carry Oral Fleet. That stuff is disgusting, makes you gag as you try to down it. Pico-Salax (the doctor's alternative) tastes way better. Still strange taste / feeling, but much easier to get down I must say!

Shane

Fri / Sat - July 16 / 17th - pre-op assessment

 So Friday went well.

MRI done. It was very noisy. Kind of like a cross between a machine gun at times and a rock concert. I will be discussing the results on Tue July 20th with Dr. Miller to see if there is anything wrong with my head at all, or if maybe I'm just dehydrated because I'm not used to summer heat without an air-conditioned office to hide in all day.

Pre-op assessment, they measured my heart rate pattern, blood pressure, did a chest x-ray, took urine and blood samples and had a couple of consultations regarding what to expect pre and post surgery.

Surgery: I'll be having a three field esophagectomy.

• I'll have to wear fancy diabetic stockings to keep potential clots from my leg veins going anywhere. I'll have to wear them for 18 hrs before surgery, during and for a number of days after the surgery.
• They gave me some sort of pumice rock sponge to scrub my chest with to make sure I'm quite clean for the areas of surgery. I haven't seen it yet, so I'm guessing at its material, its in a tinfoil wrapper.
• I have to take some oral enema prescriptions to have nothing in my digestive track from around 2pm Tue until days after the surgery. Only clear fluids on Tue up to Midnight, and nothing after midnight.
• I have to arrive by 6am, surgery scheduled for 8am with an estimated surgery time of 4-5 hours. Maybe a couple more as a buffer.
• I'll be out cold for the whole surgery and will be groggy for another 8 hours after surgery.
• I won't have one of those buttons for self administering the pain drug post surgery. Instead I'll have an epidural attached to a medicine pole with a constant controlled drip of freezing for pain area.
• I'll have a catheter at my wrist into an artery (instead of a vein like many IVs) to measure blood pressure (possibly more).
• I'll have a tube through my nose into the chest cavity between my lungs and chest to remove air pockets caused by surgical exposure.
• I'll have a feeding tube into (the remains of) my stomach coming out my side to bypass the surgical area.
• I'll have 3 incisions, 1 on my side, one in my mid to lower chest and 1 on my neck.
• When I wake up, for a couple of days, I'll have to practice hourly deep breathing and coughing exercises to remove any fluid build-up in my lungs and prevent surgical pneumonia.
• I'll have an IV site set up as well for medicine injections (as needed) and for nutrition / hydration.
• A catheter for pee.
• After surgery, I'll be spending 1 day in a "step-down clinic" one bed away from intensive care. After that close monitoring, I'll be moved to the quad / semi-private / private for longer term stay.
• Because of all the tubes, incision sites, I probably won't be doing much for a couple of days (like reading) But I apparently should be able to walk around after a couple of days.
• Visitation hours are between 2pm and 6pm and are limited to 2 people visiting at a time (according to the parking garage sign.) Kaye is welcome anytime, they make allowances for spouses.

On a lighter note, I'm helping celebrate Zoe's birthday today (actual BD is on Sun, her 11th) at Laser Quest with some of her friends.

Oh, the doctor gave me a prescription for the oral enema, but it isn't stocked in Milton. So I have to wait until Monday for a replacement suggestion from the Doctor. One that hasn't been discontinued in Milton, either that, or travel to Hamilton just to fill out a prescription for Tue.

Monday's chemo doctor followup was canceled as unnecessary since surgery has already been scheduled.

Shane

Getting stronger...

FYI: I survived a full Karate class on Monday. More frequent breaks to catch my breath, but I made it through. Now its Wed. and my muscles feel alive! Ah, I missed them, its nice to be back, even if it is for only a week and a half. :)

Oh, my apologies to a certain 6' plus, 200 lb individual's jaw during jui-jitsu head-lock escapes. I guess I don't know my own weight (I have weight!? Well, I guess I did gain 4 lbs since chemo ended. lol)

-- Shane

Surgery todo list...

Ok, here's what I know.

• I've had a head-ache for 3 full days now. A doozy of a headache! The surgeon doesn't like that and is now prepping me for an MRI scan (date TBD) of my head to make sure it isn't cancer. I'm going to assume, for now, that it is some sort of chemotherapy withdrawal symptom that will pass in a day or two.
• Pre-Op assessment clinic:
• Friday July 16th @ 8:45am for 2-3 hrs
• They will be assessing my "normal" baseline and ability to go into surgery. ECG (heart scan), x-ray, blood & urine tests, etc. I guess they want to make sure I'm not on drugs or have some weird psychotic heart beat or something. Actually its to compare what is normal to what they witness during surgery to see if I'm remaining normal (for me).
• Follow-up with chemo trio-team (chemo, radiation, surgeon experts) at Juravinski cancer center on the 19th with some blood work.
• Return visit with Dr. Miller (surgeon):
• Tues July 20th @ 11:45am
• To go over the MRI results for my head (fingers crossed they find nothing) and handle any further questions about surgery or the pre-op assessment.

• Day of the knife! (Dum Dum Duuuuum! *Eerie music sounds*):
• Wed July 21st @ 8am, have to arrive around 2 hrs early, leave house 1 hr before that, and actually get up and be prepared to leave... so that makes... 4:30am! Sigh...
• 4 - 5 hour procedure (apparently), I'll be knocked out the whole time (Yay!)
• Procedure: Three Field Esophagectomy (if you want to look it up, but don't if you're squeemish).
• Some stats:
• 80% chance they can proceed once they start and see what is surrounding the esophagus.
• So that means 20% chance that something will prevent the rest of the surgery. Like they have to remove too much of the stomach and esophagus in order to have enough stomach left to reconnect. Or, cancer has spread more than scan shows, and surgery isn't advisable, or ... other complications.
• Roughly 100% of survival (if rounded) while on the table.
• However, if complications are to occur, it will likely be during recovery. So avoiding visitation for a good 3 or so days until I pass the infection complication stage is advised.
• I'm currently arranging for semi-private (instead of quad/ward or full private) room.
• FYI: they want to remove (if enough stomach to do it) my WHOLE esophagus. However, since they aren't sure how bad the cancer is in the upper stomach, they aren't sure how much they'll have to work with, so they will remove enough esophagus as they can with what stomach I have left to reattach with. This is a preventative measure, as this sort of cancer tends to creep upwards, and they don't know with certainty how far it is without microscopic biopsy. So it is safer to remove as much as possible. 
• If they can remove all of it, on the bright side, I won't really have heartburn like I used too. You see, the stomach lining doesn't get heartburn, just the esophagus, but since my esophagus will be stomach lining, it won't hurt. :-)
• Unfortunately, I won't have a valve, and may prefer to sleep sitting up slightly. That sucks.

That's all I have for now.

-- Shane

Last day of Chemo is today (Tue July 6th)...

Well, I'll be glad when the symptoms go away. Time to build up my endurance once again before the surgery.

• Tomorrow is the CT scan (Wed), 
• 7 days from now (Tue) is the surgeon follow-up which will determine a surgery date (I won't know before that). 
• Also on the 19th is a general follow-up with the chemo team that includes a blood-work examination to see how I'm recovering.

Thanks for everyone's support through this first stage of my ordeal.

Shane

I felt the quake... you?

1:41pm a quake hit 53 km from Ottawa today. I felt my couch shake in the basement and was wondering who was behind it shaking it. No one. By the time I looked for fluid to see if I was imagining it, the tremor had stopped. Radio confirmed it happened though.

Anyone else feel it? I hear Ottawa and Toronto buildings were evacuated.

-- Shane

Chemo - Days [44-48/63], (Thu-Mon) Jun 17-21 [/w event dates update]

Man, this time was worse than the last one. I think I'm over the worst though. Should be fairly straight forwards from here. Only 15 days of chemo left.

Dates of note:

• Last day of chemo Tue July 6th
• CT scan scheduled for Wed July 7th, early
• Follow up with main surgeon, Dr. John Miller, July 13th @ 11:15am at St. Josephs hospital. This will determine when and what surgery is required.
• General follow-up July 19th with the 3 doctor team from the Juravinski cancer center that have been monitoring my progress as a joint effort (chemo, radiation and surgeon) @ 2 pm (lab/blood work) and @ 2:30pm (meeting).
• Stage cancer was at will be unknown until visible by surgeon. (So I'm told).

Surgery date is complicated. They said I need about two weeks after chemo before surgery.  But, Dr. John Miller goes on vacation for 3 weeks starting around Fri July 23rd. So timing is critical. Surgury before is good, but may be hard to book. Too soon, and I'll still be weak from chemo. Too late and I have to wait until after his vacation or get another surgeon. After the vacation could cause recovery of the cancer and would definitely lead me towards long term disability instead of the up to 17 weeks of short term disability I can claim. Which has financial implications.

So we're hoping it can happen before the vacation. But we'll see.

-- Shane

Chemo - Days [42-43/63], (Tue-Wed) Jun 15-16

[Sorry for the re-email for people auto-notified, fixed some spelling -- Shane]

Well, its Wed. and first day of round 3 and 66% done. So far, black belt training hurt more and was more stressful and took longer. But, black belt training I came out of it with strength and endurance. I'm going to come out of this with fatigue and muscles eaten away by my body to feed myself. Both of them having me losing about the same amount of weight, though that really depends on the next 7 days. Personally, since I've taken a distinct dislike to nausea, probably more than pain, I prefer the black belt training.

I.V. drips of chemo SUCK. I feel like crap. But I've learned a bunch so I've kept my meals down (I should be cautious saying this, last time I did (round 1 of chemo) I chucked mid typing. lol.) But I'll get through this.

Surgery in approx 5 weeks. That will likely cause pain. I may revise my opinion then and choose nausea over pain. We'll see. Here's hoping. Definitely not looking forward to a catheter. This will be my first surgery.

-- Shane

Chemo - Days [36-41/63], (Wed-Mon) Jun 09-14

Hmm, time flew bye. Forgot to blog.

Not much going on. No new news. Everyone is well again (no migraines or sickness).

Was bored so helped out a bit with work today (computer stuff).

Upcoming Schedule:

• Tomorrow (Tue) @ 9am will be a doctor's consult and lab-work (blood sample). My parents will be getting the children to school. 
• Wed @ 10am will be the full day of the last day/round of chemo injections and Kaye's parents will be watching the kids return from school as we'll be there some time between 5 and 7pm depending on when we get called out of the waiting area.

Thanks for everyone's support over the last 2/3rds of this chemo therapy. :-)
-- Shane

Chemo - Days [32-35/63], (Sat-Tue) Jun 05-08

...
Next (third and final) chemo day is Wed June 16th (next week, not this week). I show up in the waiting room for 10am and don't usually get to leave until somewhere between 4 to 6pm depending on when I get admitted into the injection/drip area from the waiting room (can take a few hours depending on the lineup).

Kids are so happy to be homework free! They were computer-less for a couple of weeks and suffering from game withdrawal. lol. They did a great job on their projects, but we forgot to take photos. Hopefully the projects survive until they get home and then we'll take photos.

I'm ok. I have good and rough moments. Mostly good lately. But some days (like Mon) I just have to do nothing and sleep most of the day. The rinses are helping with the mouth sores. They are mostly gone now, but I'll probably be living with them in some form until the chemo is done.

That curry dish last week was a bad idea. Tasted great, but gave me a bloody hemorrhoid (literally) from the spices that won't go away. I hate being afraid to go. It really hurts. I'm also concerned how much it bleeds. I have a low cell count as it is. I have a cream, so hopefully it will go away soon. (Fingers crossed). Oh, FYI, I have not yet caught the fever that Kaye and Tao had, hopefully I won't.

Kaye's doing well, she says there is a storm moving in tomorrow though, the pressure change is triggering a migraine tonight. I guess that's her version of the weather foretelling bunions you hear about with some people down south.

Shane

Chemo - Days [29-31/63], (Wed-Fri) Jun 02-04

About the half way point now. Tomorrow will be day 32 of 63.

Today, Fri, was a good day. Managed a curry noodle dish, and a hearty helping of it too! About time too, I've lost another 6 or 7 pounds this week so I have to start making it up now before round 3.

I was also able to help the girls with homework today. Talking too long has been a problem recently because of the throat problem, so I've left it to them and Kaye to work on their projects. I helped with Zoe's Mayan research, next will be ancient Greek and Chinese and a medieval keep for Nia. The weekend will be full of their school project work. They are large projects, and there is much left to be done. Lets hope they have the ability to focus, or they won't be ready by their due date, Monday.

Shane

Chemo - Days 26-28, (Sun-Tue) May 30-Jun 01

Well, 4 weeks done, 5 weeks left of chemo.
Note: I want to thank my folks who've been helping for the last two days manage the kids. Kaye's been running a high fever and been out of commission for Mon and Tue.

Last few days have been recovery for me, from Sat's party and from a new symptom, mouth sores. They are common to most high dosage chemo treatments. They are like little canker sores at the back of the mouth near the uvula and tonsils (in other words, back of mouth near gag area), sometimes inside the mouth too. My first thought was that food was stuck to the back of my mouth as they were white and I had just been eating white corn tortillas chips. It doesn't hurt a lot, it is more like an irritating feeling like something is stuck back there (like food) that makes you want to keep swallowing to get rid of it.

According to the doctors, once they appear in a chemo patient (they don't always) then I likely have to live with them until the end of chemo. So I just have to keep them clean, rinse/gargle with salt water and/or baking soda. I also have an antiseptic/antipain perscription wash that I can mix with Mallox to gargle with in case they get out of hand. So once again, I'll survive, just another piller to climb in the battle.

PS: Thanks to all who posted happy birthday emails and facebook postings! I plan to enjoy my BD by sleeping and possibly more this evening (depending on the kids homework level).

Shane

Chemo - Days 23-25, (Thu-Sat) May 27-29

Sat Morning: Get together is a go. I'm well enough to receive guests. Thanks in advance to all who attend today's gathering. :-)

Thu & Fri: was a fight with injection induced nausea, but I managed. Only lost the battle Wed night. Overall went better than first go-around since I know what to expect and how to manage myself a bit better now.

Sat Afternoon (update): party was a success. Thanks to all to dropped by to lend a hand or just say hi. It was an "uplifting" experience. Special thanks to Gary, Derek, James W., James B., Tyron the heavy lifters. Thanks to Ted, Lianne, Deb and Heather who helped dig/level and supervise. Thanks to Sam and Dalson for watching the kids. Also thanks to our parents, Sheila, Ming, James and Dale for helping with food and cleanup. Thanks for the gift folks! I will remember this for a long time. :-)

-- Shane

Chemo Round 2, Day 1 (day 22 total)

 Chemo - Days 19-22, (Sun-Wed) May 23-26

 Enjoyed some sun @ SpringRidge farm with the kids on Sun, fireworks with them on Mon.

Tue: blood lab work & doctor consult -- results ok, white blood cells down a little, but nutrition and cell counts (red and white) cleared for continued chemo. They agree with me, they like Imodium too. (It really works well.)

Wed: Day: chemo injections x2 all day, was ok. Made use of Greg's radio he loaned me and listened to some 1955 sci-fi radio shows. Creepy writing/acting.
Night: nauseated. Going to sleep now. Was in good spirits until about 8pm. ... Darn, lost my cookies! (Don't bother looking for them, not that kind of lost.) :-(
Sigh, going to be another rough couple of days. Going to sleep for real now (hopefully). Hopefully, I 'll have better control over these symptoms by Sat. for my guests. But don't expect it.

Thanks,

Shane

Chemo - Day 16-18, (Thu-Sat) May 20-22

Fri May 21: started loosing my hair (everywhere), small amounts, and they don't just fall out, only with scrubbing do the hairs come out (like from a wet washcloth), but its coming out.

I was also particularly in pain and grumpy on Friday. I'm thinking its related to the hair loss starting. I apologize to all who crossed my path that day.

Nothing special to report for Thu or Sat.

FYI: Sat May 29th, looks like the event has been down-graded to "level the troublesome stones in my patio that can make people trip". A much smaller project. It was meant as something people can help me with and it needs to be done. If people have the desire to do something for me, but can't think of any way to help me, this is something that I need that people can help with. It is purely up to each person if they lift a finger, it is for those who feel they want to contribute but don't know how too.

Thank you,
Shane

Chemo - Day 12-15, (Sun-Wed) May 16-19

Not much to report. Apparently they zap me with the injection, life is hell, then I slowly recover, but not quite to the point of before the first injection, then they zap me again a bit stronger, then I recover until the next injection, but less than before the last one, zap & repeat.

So right now I don't feel so bad. I'm 1 week from my next injection and getting a little stronger each day, trying to recover the weight lost from the first 4 days after my first injection when I had trouble eating anything.

-- Shane

Chemo - Day 11, (Sat) May 15

Today was uneventful, relaxing. Had Vietnamese Pho soup for supper, yum! :-)

-- Shane

Chemo - Day 10, (Fri) May 14

...
This was a good day. Walked to Home Depot and back for some supplies, bathed Tao and a couple of other feats. Might have been due to the lunch Tea though... first caffeine fix for the last 10 days.

I like Gary P's suggestion of May 29th for a gathering at my place. Honestly, I'll be useless as it will be 3 days after my 2nd round of injections. I might be able to handle one bag and one stone, but then I'll be done... probably, we'll see. I bought safety stuff so I don't scratch myself and have to worry about my low white/red cell counts though, some 2x safety gloves and 5x dust masks. Let me know who's interested in attending so I can get supplies together. Since I won't be much help, if we don't get enough people, it will just be a work party (minus the work).

Shane

Chemo - Day 8-9, (Wed-Thu) May 12-13

Seems to be getting a little easier. I'm getting a handle on the self medication dosages / frequency so that I'm of more help around the house. Did the dishes last night! (Whoot!)

Kaye and Dale picked up a patio set for me today from Ikea:

• Picnic table
• Detached Bench (for one side of table)
• 2 single chairs (for other side of table)
• Overhead patio umbrella for center of table
• = $320 (ish), Picket white fence style chair/bench/table, lots of space between wood so light and airy looking.

They hope I'll sit outside more.

I think for that, I'll have to have a family gathering of able bodied people over to level the stones in our patio first. Looks like winter/summer heaving for a few years has wrecked havoc on their alignment. Anyone want to party at my place on a warm day coming soon (before mid summer, suggestions welcome). Hey, my BD's June 1st, I think this qualifies as one hell of a joint communal gift for a birthday (I'll still pay for the dirt required for leveling and can supply some food). ;-)

Shane

Chemo - Day 7, (Tue) May 11

Imodium is good. Praise be to Imodium! (I'm kidding, but it is still good!) In an attempt to fight back against weight loss, Imodium has allowed me to consume a lot of calorie laden corn chips. I'll go back to healthy stuff for my next meal, promise. ;-)

Chemo - Day 4-6, (Sat-Mon) May 8-10

Still here, still fighting.

Figuring out ways to fight, or overcome nausea to eat/drink more. Discovered having something dry to suck up the nausea saliva helps keep the pills down. Constipation replaced by the runs.

I've lost 5 lbs in the last 6 days. Kaye says I look now more like when we first met (11 years ago). Who knew? To loose weight, all you have to do is barely eat, and have your food not digest properly when you do. Cramps still keeping me up though, so I'm sleeping longer time periods to compensate.

Periods of non-nausea longer now, so I've had more food cravings. (What was with the craving that made me eat half of a head-lettuce today?!)

Kept myself busy (when I wasn't resting/sleeping):

• Sat: Did some Karate Sat morning. Managed to do about half a class at 20-25% normal intensity before becoming too fatigued to continue. Kids and Kaye did their classes too.
• Sun: Broke Nia's PC (whoops), disassembled Tao's old PC, used its parts to resurrect Nia's PC (Yay, don't need to buy a new one!)
• Felt sad for Kaye always looking at me like she was going to cry. Figured my messy hair and generally untidy, tired appearance didn't help, so I shaved my head to 2/8ths of an inch and shaved my whiskers off. Will make things easier to maintain and it looks way better, like I'm neat or something.
• Mon: Did some errands out of the house. Nice day for a walk. Ming's making Taco's for the kids (they're so happy). Kaye's out gardening.

Shane

Chemo - Day 2 + 3, (Thu,Fri) May 6-7

Fighting constipation, nausea and fatigue.

I couldn't keep down Thu night's dosage/supper, the nausea was too great and I wasn't in time with the just in case pill that time.

I can still get around, all my hair is still present, just discomfort, fatigue and the inability to eat much because my intestines aren't making room for more food. I'm trying to address that today. I look forwards to being able to eat normal quantities again. Two reasons for the constipation: 1) Kidneys demanding more than their share because of one of the injected chemo drugs, sucking water from everywhere, 2) one of the anti-nausea drugs (that runs out tonight) is very constipating. So hopefully as the kidneys recover, and the anti-nausea drugs wear off, it will go away.

Sleeping more (during the day), and sleeping less (during the night). The marathon has begun.

Shane

Chemo - Day 1, Wed May 5th [part 2]

Ok, that wasn't great, but it wasn't unbearable. Manged to get through it, read my kids a bed time story, and still check emails (hard on the eyes, my white screens are, yes! [in a Yoda voice])

All symptoms I've had previously in my life:

• Signs if pending throw-up (but it didn't happen, I prevented it), sweaty hands, upset stomach, increased saliva...
• Pains (stabbing kind) in the stomach/intestines like I'd foolishly eaten both milk and wheat recently. (aka constipation & cramps that stop digestion by clamping off the intestines with their spasms)
• Eye sensitivity, like I'd just had eye-doctor like drops that make it so that your eyes are very sensitive and someone else has to drive.

The nausea "just in case / super gravol" pill seems to have helped. Before that kicked in, tai-chi breathing meditation helped take my mind off it and self instinal massage helped with the cramps and pains as did (ahem...) trying to relieve the constipation so that the cramping areas could have somewhere to move too. All things I've dealt with before.

Again, maybe not quite "That's easy!" like my last post, but based on my past 36 years of life, its still quite doable. I'll get through this! :-)

Shane

Chemo - Day 1, Wed May 5th

Shane:

"That's easy!", Brave Brave Sir Robin from scene 35 of "Monty Python and the Holy Grail" at "The Bridge of Death".

So far so good. Only a strong sensitivity to light (that gives me a headache in strong light, but that's from the anti-nausea drug). Other than that, only a strange feeling of unease, like I know something is wrong but I can't place what. Also, probably for the first time in my life, I am super-hydrated. I have tonnes of energy and I feel very alert. They pumped 1.5 liters of saline solution (slightly salty water, like our blood) into me as well as the chemo drugs over a 4.5 hour I.V. period (plus 3.5 hrs waiting) made for a long 8 hr day.

I kept myself busy by talking with Kaye, playing Sudoku and watching "Angry Lady" across the way from me. At first she made me nervous as she just stared at me with a snear and talked in Spanish about me to her husband (?) and pointed my way with her finger talking about those "hombres" (men) over there in the two beds (me and another white guy), while she's stuck in a chair. I got a bed because all the reclining chairs were taken when I arrived. Then she unfortunately had the nurse forget to press "confirm" on her I.V. pump for her program with a bag change and was delayed for 30 minutes in her treatment. The unfortunate part was she thought they said 3 hours due to a language barrier. "Worst place she's been", she said. On the contrary, I thought the cancer center was one of the best places I've been. I mean, the service (drink, food, comfort) was on par with a good first class airplane seat. Better than many restaurant service, that's for sure. Probem was, she didn't know how to ask for things, like how to put her feet up, a pillow, blanket... etc. I wanted to help (at least to make her stop staring in apparently jelousy) but I wasn't sure how to help. I found that more frustrating than the Chemo (except for the hair pulling at the end to remove the tape holding the I.V... that hurt more than the I.V.).

The symptoms don't really kick in until 2nd day, or so. 6 to 8 days later is when I'll loose my hair.

oh oh... 8pm... starting to feel really nauseous for the first time. Time for the "just in case" pill.

-- Shane

May 04, Tue - Chemo 101

I'm now officially nervous about tomorrow.

I purposely didn't research all the side effects because I tend to dwell on things and I have an active imagination. Well, now I know the coming side effects (well, possible side effects) and I've felt nauseous all day, and I haven't had any meds yet... So I'm not looking forwards to tomorrow when I'll be nauseated for real.

I'll be taking 1100mg of the pill Capecitabine twice a day (=2200mg!), but I have to do it in 5 pills as they don't come in 1100mg dose sizes (1x 500mg + 4x 150mg = 1100mg). Also, I'm to take two different anti-nausea drugs 30 min before the first dose of chemo, and periodically for the next two days. I also have a 3rd anti-nausea drug that some describe as a super-gravol that is take as needed, but not often. All the anti-nausea drugs have side-effects of their own. I don't know if I'll be having diarrhea or constipation. Some do one, some do the other, so I'm hoping they'll cancel each other out.

However, it will take time for the side effects to "take effect", up to 6-8 days roughly for the worst symptoms. Then I'll stabilize somewhat and the symptoms will become more consistent, less variable. All are temporary and should stop after chemo is finished, except possibly the Chemo-Brain, or Chemo-Fog as they call it. Temporary memory loss or short-term memory loss, forgetting about where I put something, which word I meant to say (mid sentence) etc. I'm apparently allowed to use that as an excuse for anything I forget for the rest of my life. ;-)

But, so far, I'm the youngest adult I've seen at the cancer center by at least 15 years (usually older than mom & dad) with the exception of one preschooler who was there (and bald). So I'm hoping that my body can tolerate it better than some of the "standard" population of cancer examples that generate the symptom statistics listed for all these drugs.

If I'm lucky, I'll just be tremendously fatigued and most of the symptoms will pass me by (which is why I won't list the huge list here, I'll maybe list some upon request but only if I actually experience them).

So far, I have the "jitters" only. Chemo starts 10am tomorrow.

-- Shane

Mon Apr 26 - The plan

Good news and bad news today. 

Had a PET/CT scan (both) this morning. They combine them for a much greater detailed 3D image of my insides to see what's really going on.

Good news
No direct radiation therapy required at this time. I'm able to swallow, so long as I chew properly, so they don't have to make the esophagus hole bigger with a direct zap to the affected area.

Bad news
Chemotherapy confirmed for 9 weeks starting next week, Wed May 5th. Followed by the aforementioned surgery. This will involve 3 separate chemo drugs. I'll have 3 direct injections of drugs, once per 3 week and days between injections will be administered with twice a day chemo pills. I'll be given prescription anti-nauseants and steroids to prevent nausia because apparently without it I WOULD throw up the pill, guarenteed.

Chemo will hopefully reduce the size and affected area of the cancer and kill areas they may not yet be aware of. The chemo is also required because some lymph nodes near my esophagus are slightly enlarged, meaning they are fighting something and it may be the cancer, so the cancer may not be just contained to the esophagus wall. The PET/CT combo scan will reveal more of its exact location.

New Appointment Dates:
Kaye and I will need some baby sitting for these:

• May 4th 9:15am to 12:00(ish): Lab work, Chemo 101 course, Dr. Dhesy-Thind consult.
  • Kaye's folks have the morning covered.
• May 5th Wed 10am to (late afternoon, 6 to 8 hrs): First round of Chemo injections + observation.
  • Shane's parents have the kid pick-up covered.
• Pre-Op clinic on May 4th is canceled because the tentative surgery on May 11th is also canceled.
• May 6th consult with Dr. John Miller is cancelled. Dr. Dhesy-Thind is taking over as doctor in charge during the chemo stage.

 Chemo medication (for those that care about this sort of thing):

• Epirubicin (aka Pharmorubicin®) - red coloured injection
• Cisplatin (aka Platinol AQ®) - clear, colourless injection
• Capecitabine (aka Xeloda®) - tablets. I'll be receiving the 150 mg variety instead of the 500 or 1000 mg variants. Therefore my symptoms will not be as severe (hopefully) as people receiving the larger doses. I still might loose some hair though. I'm planning to shave it off so I won't care...

-- Shane

Frequently Requested Schedules

Some frequently requested schedules:

• Kids leave for school around 8:15am, entry bell is 8:35am
• Tao finishes at 3:00pm and requires pickup, Zoe & Nia finish around 3:10 or 3:15 (not sure, they walk themselves home)
• Tao goes to school full days Mon, Tue and every other Friday (last Friday Apr 23rd he was at school).
• It takes Kaye and I roughly 45 minutes to get to the Hamilton St. Josephs hospital, so leaving 1 hour before an arrival time gives us 15 minutes of unexpected traffic leeway.
• This is Kaye's last weekend of her work contract with Gennum. She won't be renewing at this time so that she can help out at home/hospital once my treatment starts. Her hours this weekend are 6pm to 6am Friday night and Saturday night. So she is available for talking after 4pm Sunday.

Some frequently asked financial concerns:

• I have short and long term disability (STD and LTD) through Gennum. Short term starts after 5 consecutive sick days and lasts up to 17 weeks. Long term kicks in after 17 weeks.
• I'm currently taking 100% pay sick days for my appointments prior to taking short term disability. I have enough days to go around, so no worries there.
• STD pays 80% of my income.
• Gennum's Sun Life Assurance does pay for some hospital facilities, but it likely won't pay for it all. Also, extras like cable, phone etc. will not be covered.

Can't think of any other frequently asked questions right now. Took the kids to Karate today. Nothing else to report. -- Shane

What's coming

Here's some of what I'll be up to in the next couple of weeks:

As Deb points out to me in a comment, we may need assistance with kids during any of the times listed if they aren't in school for those hours.

• Mon April 26th, 

1. PET scan @ 8:45am (2.5 hrs) @ Fontbonne Building of St. Josephs Hospital,Hamilton
   
2. Juravinski Cancer Center @ 1:30pm, Henderson Hospital, consultation
   
 

• May 4th, Pre-Admission Assessment Clinic (Pre-Op clinic) @ 10am (2-3 hrs) @ Bishop Dowling wing of St. Joseph's hospital. Q&A about surgery and if I'm ready for it.
• May 6th @ 11am, follow-up with Dr. John Miller to go over all the diagnostic findings and finally decide on a course of action
• May 10th, will likely go on short term disability at Gennum through Sun Life Assurance group plan.
• May 11th @ 8am, tentative surgery (3 field esophagectomy) scheduled. Must arrive by 6:30am (so leave home by around 5:30am). This may not happen, but since it is easier to move a date, then it is to get a date. They've reserved this date in case they want to operate quickly. If chemotherapy will happen, surgery will likely be moved a couple of months later.

Notes:

• Surgery will have me eating nothing (not even through I.V. unless an emergency, which is why I need to gain weight and vitamins) for 5 days. Then they will hold me in the hospital for between 9 to 15 days.
• Kaye's parents, Ming and Dale Chen, have suggested they could become live-in support. Move in with us and care for the kids while Kaye's in the hospital with me, or during chemo where I (apparently) can't do much to help out.

A blog was requested, so here it is.

As people reading this blog probably already know, I have cancer. It is in the lower esophagus and I'm currently undergoing diagnosis to find out just how bad, or early stage, the cancer may be.

History:

• Late Jan, early Feb, I started having what I thought was mid back pains that needed a chiropractic appointment. One was a particularly sharp pain. So I had a chiropractic adjustment... no help. Later that week food stuck in my throat just before my stomach, hurt, and made me rush for a drink to flush it through. Twice in one week + the back pain in the same place made me think this wasn't normal.
• First or 2nd week of Feb, went to see my family doctor, Dr. Michael Gilbert. He gave me some prescription antacids and booked an endoscopy (scope) for a month and a half later.
• Apr 6th: First scope - Dr. Sawhney took a biopsy and a blood test for analysis. His comments to me at the time afterwords were "I found something ulcer like, but it looks weird." That wasn't encouraging, considering hes done this 100s of times in the past. Either it was an ulcer or it wasn't right? Or maybe it could be multiple things?
• Thu Apr 15th: My follow-up appointment with Dr. Sawhney revealed that there were cancer cells present. No other information was given. I think he had read the report just before telling me, and he looked more shocked and dismayed than I did and seemed at a loss for words. (Least encouraging sign so far.) He said he'd never seen such a thing in someone as young as I (36 yrs old) and that most doctors would not have even have sent me for a scope. That's when I told him the scope was my idea, not Dr. Gilbert's.
• Fri Apr 16th. Dr. Sawhney managed to get me quickly into a CT scan at the Milton hospital. I have a copy of the disk. It's 580+ MB of images of my innards from my neck to my lower intestines in case anyone wants to see it. I found it quite facinating, but honestly couldn't see anything in the trouble area that struck me as being a growth. But I had no healthy image to compare it against.
• Mon Apr 19th. First consult with Surgeon John Miller, head of McMaster University's thoracic surgery division and head thoracic surgeon at St. Joseph's hospital in Hamilton. He made me understand that the cancer wasn't just a lump but rather a thickening around the entire esophagus wall and in parts of the upper stomach wall lining. He suggested that chemotherapy for 2 months followed by surgery may be the required steps, but that further testing would be required before that is finally decided on.
  http://fhs.mcmaster.ca/thoracicsurgery/miller_john.html
• Mon Apr 19th. Kaye and I finally have the kick in the pants to get our Will & Testament and Power of Attorney filled with a lawyer (Richard Furlong in Milton).
• Tue Apr 20th, worked. But didn't get much done. A lot of interruptions by people asking questions, consoling me and looking shocked.
• Wed Apr 21st. Dentist, apparently radiation and chemo treatments require insanely clean teeth (especially radiation therapy, which I don't know if I'll be having yet).
• Thu Apr 22nd. 2nd endoscopy (throat,stomach) and bronchialscopy (lungs) done by Dr. John Miller, my oncologist.
  Also saw a dietitian. They have me on "ensure" or "boost" liquid meal / vitamin replacements to suplement my body's supply of vitamins for when I have surgery and can't eat for 5 days, or for chemo, whichever happens first.
• Fri, Apr 23rd. Working from home so I can actually get some work done today. Also started this blog at Debbie's request.