KCJ – Contest - Update

Thanks to everyone who submitted their entries for our contest with the most exciting prizes!! 

We still look forward to more!  http://kennyscancerjourney.blogspot.com/2012/01/kcj-contest.html

For you to share your personal thoughts, feelings and battle cries was most touching.  We have created a playlist in our ‘kennyscancerjourney’ channel in youtube.  We have been playing it all weekend and it has given us a great deal of inspiration.  A few are our own get-up-and-go along the way songs! 

http://www.youtube.com/playlist?list=PL642905796B208740&feature=mh_lolz

If your song isn’t there, blame cyberspace or our muddled brains or youtube for deleting it and please send again!!

Xx

Thanks to all. 

S

Chemotherapy – Round 2 – Attempt 3 … #success - continued

Hello again! 

As we mentioned, our 3^rd attempt at our 2^nd chemo finally got underway Wed., January 11^th, 2012.  We didn’t have as much of the nervous anticipation lead up waiting for blood work this time since it was done the day before.  We had our game faces on and our game plan mapped out before we got there for sure.  Our appointment was for 9:15am.  The drive was foggy but roads were good. 

It was a quick wait for our pager to go off for once.  I giggled and paused as the girl across from us waiting her turn commented that we were the lucky chosen ones when it did.  Huh, funny, that’s what we called everybody last week!!  Our Nurse, Michelle, met us at the door.  We were taken to the opposite section from our 1^st visit.  We asked for a bed this time instead of the recliner since we were there for a long time (as since I had been up since 2am thanks to my brain/mental 'to do' never stopping list…thought I could have a nap too!!).  We didn’t know they were in high demand (more chairs then beds).  We got a bed at the end by a window again (spot “9B”).  This time the bathroom was across the hall.  That would come in handy when the kidney kick as we call it “Lasix” iv bag would start.  Lasix stimulates kidneys since Ken’s chemo drug is very hard on the kidneys. 

The nurse attempted to get the iv started.  I could tell by the look on Ken’s face that it wasn’t going well.  The vein had ‘rolled’ away as they called it and the needle wasn’t where they wanted it.  She called another nurse to see if she could coax it in.  No luck.  Had to find another vein (after a short wait).  Ken worried he was squeezing my hand too hard after they successfully found a willing one. “Nope”…insert... ‘it’s the least I can do’ except watch. 

Here’s the link to chemo round 1 for a few more details on what goes on: http://kennyscancerjourney.blogspot.com/2011/12/treatments-begin-day-1-monday-12511.html

It was a full house.  Every chair and bed was taken.  People were lined up outside waiting to be ‘chosen’ when anyone was done.  We’re like our own little club.  An unfortunate bonding and concerned about what everyone’s story is.  But time seems to go quickly and you don’t know where your place is to ask.  We are all side by side and across from each other so we hear little pieces of a few stories. 

There is a full range of patients there.  1^st timers (oh yes, are we granted to feel like veterans…and want to see if we could help with just one little piece of advice that could help them with what we didn’t know?) to people who had been there many times before us.  Young, old, curious.  Many in our corner seemed to be on Cisplatin that day as well so we were most curious to hear/see their side effects from their last visit. 

One young man was there we recognized as being through last week when we got rejected.  He appears to be a regular and doesn’t stay long.  Young meaning my daughters’ era so that’s just not fair.  One person so frail & weak and sleeps the whole time.  Another jovial older gentleman just happy to have the company and hard of hearing so talks loud.  And the list goes on. 

We were excited to see Alison our 1^st chemo nurse who paid a visit (and told us how excited her daughter was for the Justin Bieber stuff).  We sent her off with some mint smoothies from Rheo Thompsons for the group (a clinic favourite).  We saw ‘Jeanette’ our chemo training nurse from afar.  Peggy our Facilitator (“Ombudsman”) stopped by for a quick visit after she filled in the 411 for a new head & neck patient.

At 12:40pm the chemo (Cisplatin) drug was on the go.  Funny, I remembered later that I didn’t hear the tick / drip sound as I did on round one.  Do you get used to it?  Also, during round one, Alison told us how chemo drugs ‘have a smell’ but she’s always around it and doesn’t notice it.  But boy I could then!  Having allergies I knew I was super sensitive to lots of smells.  But round 2…I didn’t notice it.  Was that good?!  I did notice the chemo volume countdown was 666mg again.  Enough said on what me the numbers person thought of that!!

Ken again, imagined the jug of juice as his ‘red wine’…I’m ‘in with the good out with the bad’! 

The chemical portion of the battle was now on.  Having chemo in your body is like having a pacman game happening, and the little yellow thing is going around your body, eating all the little cancer dots up.  But don’t eat the ghosts this time…they are the good cells!  We love that analogy and visualize it while it is happening and after. I remind Ken’s subconscious while he is sleeping to do it too!

Go ahead and try a game, and see if you are as good now as you were years ago at pacman. 

http://www.pacmangame.net/

We downloaded the Pacman app for Ipad on our 1^st visit thanks to Ken, Sr. and his donation of his Ipad to Ken.  Thankfully, we carry on quite a bit of business and have some distraction as well!  Xx

We were done at 2:30pm and then it was off to radiation #25!!

Interesting to note for those following blood count #s:  We asked Michelle to look up Ken’s blood counts from before he started treatments.  All we knew from then was his platelet counts since that’s all they seemed worried about.  So, on Nov.21^st/11 his ANC count was 1.5!  That is the minimum they will take to go ahead with chemo (Dec.5^th/11).  So we are thankful we even got the 1^st chemo in when scheduled.  No wonder they went down to 0.4 after chemo.  ANC was at 1.8 before chemo #2 with white blood counts at 3.1 up from 2.5 & 1.8!! 

Good job to Ken and everyone praying and hoping for an increase!!

xx

S

Chemotherapy - Round 2 - Attempt 3 - #success

Chemo round 2 is underway right now! Didn't want to post earlier and jinx it. Got the OK after yesterday's blood work! It's a full house in here.

It takes 4.5 hours to complete then off to radiation #25!

Xx
S

Meet Ally

Time to meet another member of the Kenny & Sammy team.  Her name is Ally (Al-ee).  She is our Aloe Vera plant that we use for Ken’s face and neck after radiation treatments. 

Radiation therapy causes skin changes. Skin in the treatment area may look as if you have a mild to severe sunburn or tan.  The skin also gets very dry and it can peel like it does after a sunburn.  It causes skin cells to break down and die. When people get radiation every day (as Ken does), the skin cells do not have enough time to grow back between treatments.  Ken had to switch to an electric razor and not use is favourite blade and shaving cream.  One reason being all of the additives in the shaving cream (including alcohol) would dry the skin even further.  And it would be like being a Butterball turkey in the oven as radiation would cook him during treatments.  Second reason being the fear of nicks since his platelets are low and wouldn’t be able to stop the bleeding as easy.

Luckily, Ken has a nice olive complexion so for now it looks like a tan.  Lopsided mind you…but a tan (with a ‘V-neck’ line).  Couldn’t imagine if it was my “Casper” white skin as A.P. calls me on our yearly golfing venture as I slather on the 30+ sunscreen ;-) xx

Ally has a very important job.  Every morning she sacrifices one of her arms so I can make the gel that Ken puts on his face right after radiation treatment.  It is crucial to not wait until he gets home or his skin will burn on the way.  It’s like being at the beach and not knowing how bad your burn is until that night.  Thanks C.W. for that tip.

For those who have drove Ken and those in the know…the gel has been given its own special name…Snot. ..because that’s just what it looks like!!

For those who are looking for a few less lines and smoother skin…I share with you the secret concoction below.  Ken now has baby soft skin and we both have very soft hands from applying it!  I make a new batch everyday because there are no additives it turns a rusty red colour by the next day.

P.S.  Stef & Rob – we may be over to steal the plant I hear you have if Ally doesn’t make it all the way through treatments!  She’s getting a little skinny!

P.P.S.  Thanks to a special driver with a heated cup holder console…then it’s not so cold.  I love the funny scrunchy face Ken makes when it goes on.  Somebody asked once what the gel does and I told them ‘nothing’…I just like to see the face!  Hehe.



Ally the Aloe Vera Plant



 

Need:  Cutting board, paring knife,
lemon zester (ask Ken about finding
this for XMAS one year!)

Choose an 'arm' - gently twist off

Cut off edges

Cut the arm horizontally

GENTLY scrape the lemon zester to
collect the slimy surface...don't
want the tough 'fillet' underneath

Slimy surface you want to use

Arm inside after scraping -
Gel in container

Add a bit of hot water and
whisk together with zester
- Put on lid and shake

Pack in ziplock bag and of course
include 'Habs' facecloth to
wipe your hands with after!

This is Aloe Vera Juice made
from the fillet.  Ken drinks this
with water to soothe the inside
of his throat.  Thanks J.M. for the tip!

KCJ – Contest

As we mentioned in our last post, we have passed the half way mark for radiation treatments.  While we are going downhill time wise, we will be going uphill side effect wise.   And, we still have to get 2 more chemotherapy rounds in.  They will be worthwhile but challenging all on their own.  That said we look to you for your continued encouragement, support, thoughts and prayers. 

To lighten things up and have some fun we’re having a contest!!  We have mentioned Ken’s song of the day before.  This takes him to his happy place during his radiation treatments and his intimate proximity with ‘Marvin’.  This sets the stage each and every time. 

With several treatments left, we look forward to hearing what your battle song would be!!  We will also accept poems, battle cries, haikus and limericks!!  How neat would it be if you (well your entries) are in the room with Ken, giving strength to him, and putting SCC (squamous cell cancer) in its place?!  There will be two major prizes, one for the most powerful one and one for the funniest one.  (Rumor has it the prizes may be based on left over Ensure and frozen soup). 

Don’t be shy.  Feel free to leave here in ‘comments’ or email direct:  kennyscancerjourney@gmail.com

We’ll start:

-          "ROSES ARE RED, VIOLETS ARE BLUE, SQUAMOUS CELL CANCER, GUNNA KICK THE #@!# OUT OF YOU".

Past favourites:

-          http://youtu.be/FK5VulNn3so

-          http://youtu.be/YKuKRczPpFg (bonus points to people who found this near the bottom of the blog already)

-          http://youtu.be/6Evu8L2pF7w

-          http://youtu.be/LODkVkpaVQA 

-          http://youtu.be/VgSMxY6asoE

-          http://youtu.be/aataTbxlWeM (for Sarah xx)

-          http://youtu.be/9fWvub_WBho (for Trev xx)

We apologize if any links above don’t work.  Youtube and its users are known to remove some at times.

Chemotherapy – Round 2 – Attempt 2 … #fail

If you wanted the quick version of what happened, the title of this post will be enough.  We were fired from chemo on Wednesday again.  We knew it was a possibility going in so it wasn’t as disappointing as last time.  We almost made it…

It started with a 5am wakeup call (…zzzz) to have everything ready and get breakfast into Ken before leaving.  We left the house around 6:15am to be in London in time for 7:30am blood work prior to chemo.  First stop was chemo department to check in and get our pager (#167).  Then off to the lab with their paperwork.  Our regular lab volunteer was there with his cheery smile and welcome.  “Reg” is there half days 4 days per week but not Tuesday's!  I admire his commitment and enthusiasm as a volunteer.  Then back to the waiting area to fill out the clipboard wellness form – again.  And wait.  It was quiet being there so early.  The regular staff was still filing in.  CP24 is on every TV there.  It’s nice to have a feeling of normal away from all of this.  Checked email.  The ‘Wagjag’ deal of the day was a ‘spa-liday’.  That sounded good about then.  Wonder where it is…where can we go besides here?  I hadn't been here since last Wednesday (thanks to drivers SB MC DL RB SM and holiday Monday).  It feels like the movie 'Groundhog Day'!  Round and round we go.  Same thing different day.  We left things with the Universe (insert your higher power here).  If Ken was meant to have chemo...he would.  If not, off we go to radiation and beg to have our 2:55 time moved up so we wouldn't have to wait until then.  We could always eat our picnic lunch on the way home.  I always have lots packed due to past training of going to tournaments with the girls.  Sarah said she could feed the whole team with what I sent J.  At 9am we were still waiting.  Hmmm.  Results should have been back by then. 

We heard the other pagers going off and watched the other chosen people get their turn.  It was like the school yard teams.  We're being picked over for the popular people!  I left to get a coffee for Ken and came back to find him standing at the door into chemo with his pager going off talking to a nurse.  Yeah!  We got in.  She wanted to take him back to start the IV drip.  Really really??  We passed the blood test??!!  “Well, I was told to bring you back and start”.  We excitedly went to get our stuff to head into chemo!  As we gathered everything, the nurse came over and apologized that they made a mistake and we weren’t getting chemo again.  She was told to bring us in, but the lab had sent a request to the Dr. based on the results.  They were concerned about them and needed the decision from them.  The Dr. felt Ken needed to wait another week. Close but not close enough. Try again next Wednesday.  They need his “ANC” count higher.  It was 1.1.  They like 1.5 – last week was 0.4 so we thought it was good for us!  For those keeping track of Ken’s platelet count, we got a 156!  The highest ever (lowest was 61 – last week 75).  So that was exciting. 

Techie definition:  Absolute neutrophil count (ANC) is a measure of the number of neutrophil granulocytes^[1] (also known as polymorphonuclear cells, PMN's, polys, granulocytes, segmented neutrophils or segs) present in the blood. Neutrophils are a type of white blood cell that fights against infection.  The ANC is calculated from measurements of the total number of white blood cells (WBC), usually based on the combined percentage of mature neutrophils (sometimes called "segs," or segmented cells) and bands, which are immature neutrophils.

Easier definition:  stay isolated and away from germs because you don’t have anything to fight sickness or an infection.

Chemo printed yet another new schedule for us and off we went to radiation around 9:30am.  We tried to move up our 2:55pm radiation appt but one of the machines was down.  That meant Ken’s machine was doing overflow.  We waited for a bit do see if someone didn’t show but that didn’t happen.  We asked again at reception and there were 7 people ahead of us.  At approx. 15 minutes each, that would be a long wait.  So we left the clinic and ventured out into the real world.  It was nice and sunny.  When we got back, they let us go in early. 

And with that Treatment #20 was done.  Yes…20…over the half way mark for radiation.  So now we are going downhill time wise.  Unfortunately, side effect wise we will be going uphill.   We still have to get 2 more chemo rounds in so we’re hoping next week will be a go.  Blood work will be done at our chemo Dr. visit Tuesday that will give us more notice this time.  We finally made it back home around 3:30pm…long day…again.

"Pain is temporary.  It may last a minute, or an hour, or a day, or a year, but eventually it will subside and something else will take its place.  If I quit, however, it lasts forever."

~ Lance Armstrong

Xx

S

Meet Marvin!



Kenny & his alter ego Marvin



You gonna get it dude!



We are enjoying 3 days without going for treatments.  Thought we would introduce you to another member of the Kenny & Sammy team.  Marvin.  His birthday is 11/22/11.  To our numerology friends he’s special because he has a unique ‘master number’ (11).  I am an 11 too.  Ken is a 9.  Haha. 

You can read more about how Marvin was born in the archives under 11/22 posted on Dec. 4^th (Mask making).  Yes, Marvin is Ken’s radiation mask.  He plays a very important role in each treatment.  The radiology team has a very detailed plan of where the beams concentrate their effect to look after the demise Teddy & Lenny.  That said, Ken’s head and shoulders must stay completely still to minimize the effect on healthy cells.  Sure, treatments sound straightforward and effortless at 10-15 or so minutes each. But imagine being inside Marvin the whole time.  And yes, those are clamps on the side so you have no option of getting out before the technicians come back in the room.  Anyone with a claustrophobic tendency (Ken) needs to become skilled at going to a happy place.  This is where our theme song of the day came from as mentioned in earlier posts.  Some people have them cut out the eyes and mouth area to help with that.  We both visualize our own laser beam focus on this battle and have the death stare locked and loaded on the cancer cells.

A better mask explanation from a blog we’ve found of a retired Air Force member who has been through the throat cancer journey: “I’m writing the President and letting him know I’ve found a new enhanced interrogation technique that makes water boarding obsolete.  If we want answers to any questions just send the guilty party down to the radiation office and have them fitted with a radiation therapy mask, after 20 minutes they’ll be singing like birds.”

If Ken’s face changes too much due to weight loss, he will need to get a new mask made.  This gives him great incentive to keep eating even when he doesn’t feel like it.  Well that and the guy who came walking out of radiation with no gown on with his feeding tube swinging back and forth.  Dude…really??!!  Yuck!

And the good?? news…we get to bring Marvin home when treatments are finished.  They say some people nail it to the fence and shoot it.  Well we won’t be doing that.  Our thought for now is to paint the Boston Bruins logo on him since Ken is a Montreal Canadiens (Habs) fan and they are fierce rivals.  Then he can shoot hockey pucks at it!  Or we can line it with plastic and drink beer out of our 'Stanley Cup'...since my Leafs haven't done that lately!  Anybody looking for a Halloween costume idea?!

Xx

S

"A bend in the road is not the end of the road... unless you fail to make the turn."

~ Unknown

Chemotherapy – Round 2 – The adventure continues

Back to London today for chemo #2.  Roads weren’t too bad considering the dumping of snow and slippery roads we had last night.  Radiation was first.  Got our new schedule for the week.  Technicians told him not to lose any weight because his mask had some wiggle.  If too much space, we have to get a new mask.  We told them it was from the clump of hair missing from the back of his head!  Didn't work.  Ken’s weight is maintaining but his cheeks are a little thinner. 

Then we went upstairs to chemo to check in.  Yeah Step 2!  We were told he needed blood work again because our last test was from a week ago.  So we're like why did we sit here last week and get it done? And our next chemo schedule shows the same time spread for round #3.  Also, the pharmacy wouldn’t fill our order for the anti-nausea pill he takes once we get in there until blood results were back.  So there we sat for another hour waiting for blood results before they would even take us in.  I did see our 'new clinic friend' from the St. Marys area already in chemo and hooked up...and he was here same time last week for the Dr. appointment and blood work too.  So I thought something was up and the Dr. didn't like Ken's counts from last week.  That said we were fighting the fever monster last night. 37.8 around 2am.  If it is at 38 for an hour or 38.5 anything it's emergency room time.   

Finally our pager went off.  The nurse came over to get us.  Then she told us that we wouldn’t be doing chemo today because the counts we too low L.  So as Donald Trump would say “You’re fired”.  And it was time to go home.  We were very disappointed.  The anticipation builds as chemo comes close.  You have to pump up the fluids / food intake / positive thinking and know you’re going to be one step closer to the finish line.  It was a long, quiet ride home…though it did seem a little quicker because the roads were in better shape.

So what’s next you ask? As did we.  Radiation schedule stays the same – every weekday.   Today was #16 of 35 so we’re close approaching the half way point already.  Time does fly as we had hoped.

As for chemo, we go for blood work next Wednesday at 7:30am.  If blood counts OK, then chemo will follow at 8am.  If not, we’ll go from there.  That also pushes out our 3^rd chemo another week. This reminds us of our ‘1 day at a time’ motto.  Until then, we carry on but will be restricted with where we go and keep away from people with the chance of them being sick.  The low counts typically mean he is fighting some sort of infection. But because of the chemo there’s nothing to fight it. The nurse also told us sometimes some people need an extra week between chemo treatments.  He’s also not allowed to take Tylenol for fever (or his mouth sores) anymore because it can mask/hide an infection.  Perhaps I’ll get to try out my ‘fever card’ that gets us to the front of the line in the emergency department.  I didn’t want to find out how well it works but thankful to have it.

Xx

S

"When you feel like giving up, remember why you held on for so long in the first place."   Unknown

The Taste buds have left the building

STOP right now…well after you read my point…and think about what you last ate.  Did you inhale it?  Did you notice how it smelled?  What texture did it have? Was it one of your favourites you can’t live without?  At this time of year we think of all our special Holiday treats and picture them before that savoury moment with anticipation.  Unfortunately, that’s what we take for granted on a regular basis as we rush through our busy days.  We used to be guilty of that too.  Not anymore. 

It didn’t take long, and some tastes seemed like overnight, but Ken’s taste buds have left for now.  A few weeks ago we kept track of what Ken ate and made a ‘yes / no’ list.  The ‘yes’ column included:  chocolate, ice cream, coffee, hot sauce, onions (raw), strawberries, pineapple, blueberries, apples and bananas.  The ‘no’ list was everything else we tried.  By last Wednesday, blueberries, apples and bananas left as well.  Now, we’re down to coffee.  But it’s something.  His sense of smell is working fine.  Grandpuppy Bella is visiting today and tested that a few times…phew!!

Ken best description for us to imagine is ‘eating a wet blanket with a permanent pizza burn and blisters in your mouth’.  Not too painful but just not something you would choose if you had to.  But, he’s never been one to hold back what he thought J.  He is very determined to keep the weight up.  It’s hard to eat when you don’t feel hungry because you can’t taste. 

Now when we eat, it is an experience like it should be.  I describe what something tastes like by comparing to other memories.  Our table talk includes smells, textures, temperature observations and memories of when we have had it before.

So we challenge you to enjoy your next meal as if you may not taste it tomorrow. Slow down.  Analyze.  Enjoy the food AND the company.  We do J

Life is short, Break the rules. Forgive quickly, kiss slowly, love truly, laugh uncontrollably and never regret anything that made you smile!

SMILE 

(one of Ken's theme songs in radiation to go to his 'happy' place.  Who do you think of when you listen to it?)

XX

S

Treatment Update / Merry Christmas !!

Season’s Greetings to All!  Hope you are enjoying some special memories over the holidays.  We are taking pleasure in a 4 day break from treatments as the clinic is closed Mon. & Tues. (and weekends).  We call the time to, from and at treatments our “Gilligan Tour”… normal round trip is a 3 hour tour.  When we add Dr. checkups and bloodwork that’s another story. 

Here’s an update on what’s been going on.  The chemo kick took about a week to get out of Ken’s system.  He is definitely not as tired as that period, sleeping well and eating well.  His voice is better than the last few weeks.  Energy level is up too.  Teddy is definitely shrinking based on the pictures we still take.  His throat is sore but more like a nagging sore throat.

Monday we met with radiation resident, Dr. Vikram Velker.  He assists Dr. Read and reports things back to her.  The dietician was there again.  They were most pleased and surprised that his weight had maintained.  It was up a little but he had his shoes on this time! Also liked how his skin is holding up and pleased  how teddy looks from inside his mouth. They noticed the difference from the previous visit. And...after he was done feeling his neck and writing things down...he remembered Ken had a lymph node tumour too and had to go back and try to find it because it has changed too!!!  I noticed the change on his neck so was glad to have it confirmed.  All positive news.  We were told the side effects will catch up to us a few days after the next chemo (this Wed. the 28^th) as the radiation gets further along.  That said, we got prescriptions for mouthwash for mouth sores he already has "lidocaine / xylocaine" and liquid codeine (only if pain not managed by Tylenol.  The dietician also wants him to drink 6 “Ensure plus calories” a day should eating become more difficult. The vanilla is tasty like a custard/pudding.  We’re going to have ‘Ensure-nog’ for XMAS with some nutmeg and a cinnamon stick J.  The VON comes to the house once a week to check on things.  We get a different nurse every time so far.  One was an extra special visit because we know her and her husband's family…xx! 

Wednesday was a long day - left at 7:30am – back at 2:30pm. Very dreary & foggy all day.  Drove there in the fog.  Drove home in hard rain and fog.   Started with blood work for chemo prep/platelet count, then visit to Dentist, then radiation treatment (lucky #13), then chemo Dr. checkup.  Ken’s platelets are down again (71…normal 150-400ish).  They didn’t seem too alarmed and was just a matter of fact note she gave us on the way out because we wanted to know.  Guess that’s the chemo attack.  I suppose we’ll find out Wednesday in chemo if they show up with a bag of platelets if they are worried.  They want him to keep the sodium up now too to help against the kidney damage possibility, with soups and broths.  Dr. Kuruvilla was behind schedule as she tended to other patients with challenges or it wouldn’t have been that long of a day.

Thanks to our recent drivers – M.H. / M.D. / R.C. / B.A.H. / D.L.  It is nice to catch up with everyone, share a bit of our experience and enjoy the scenery instead of the traffic.

The next little while may be a bit unpleasant.  But the view from the other side of this mountain is amazing.  We will stop in often and let you know how we are doing.

Xx

K&S