"Testing...Testing...is this thing ON?"

Just checking in to say we are still very much hanging in there.
Thanks to those who keep in touch & continue to support us!

Watch for my update this month to get everyone up to speed!

This post is dedicated to my 'big brother from another Mother' who inspires me to my soul.  He is a reflection of humble, genuine, authentic and never give up.  Honour to have crossed paths!

So glad we bumped into him today.  It encouraged me to dig my way out of the trenches so I can share more of the journey.

So my friends hang on to your hats, keep your arms and legs inside the vehicle at all times.  And of course flash photography is encouraged.  That's what keeps the memories alive.

xx S

10 Weeks Post Treatment – CANCER SUCKS

Wow.  Yes it’s been 10 weeks since the last treatment.  To give an update of what’s been going on all I can say is ‘CANCER SUCKS!’.  There isn’t enough room here to give every little detail of what we’ve been through with this horrible disease.  I have changed the word to describe ‘disease’ several times.  There are so many words I want to call it. 

We were told for every week of treatments to expect a week of after effects.  Since we had 7 weeks of treatments I eagerly awaited the 7^th week after.  Sadly, it came and went.  There have been so many ups and downs.  Good days and bad days.  Enough already.  Please let me off the ride.  I want to go home.  I am so sad that our normal is gone.  We have lost so many things that we will never get back.  It has been like going through a period of mourning after an incredible loss.  I want the lump in my throat to go away from holding in my emotions to keep the bus moving.  Am I angry?  Hell yes!  Damn you cancer.  Please leave my loved ones and I alone.  We don’t want you here.  You are not welcome.  Never were.  Just when we thought the light at the end of the tunnel was getting brighter it was only to realize it was a train coming the other way to knock us off the rails yet again.

Unless you’re here deep in the trenches there is no way to describe our experience.  As with any illness or any event for that matter, everyone’s experience is different.  We’ve been hard at this for 22 weeks now.  That’s 11 fortnights…a blink of an eye…crazy time warp. As much as it feels that time flew by it also felt like crawling through quicksand.  I can’t really explain it.  I just know we’re outta gas.  The car is broke down by the side of the road.  The reservoir is empty.  Solomon says ‘life is but a puff of smoke’.  I can hang on to that.  Life is like a mist that rises into the air and evaporates.  This too shall pass.  Thank you thank you to everyone’s higher power (whatever you call it) that there is another side to this journey.

Every sphere of our life has been shaken:  personal / spiritual / family / career / financial.  Without balance in each of these areas you fall quickly into survival mode only.  Oh yes.  We will survive and look back on this someday.  Until then, we hang on battle weary at the knot at the end of the rope that is worn and frayed.  Knowing that you are all under that rope pushing us up gives us great strength.

I apologize for not posting often.  To me it was another blink of an eye but I’ve been on the front line in this battle.  We were hunkered down in the bunker with little reserves.  I put a lot of energy into my posts through notes, calendar entries and online research to try and explain the moment.  I write, re-write, walk away many times.  It can be draining on one hand like reliving it all over again.  But it is also cathartic to get it off my chest.  My patient is very important and to him my dedication lies.  To my followers who missed me or wonder what’s going on please feel free to email or comment at any time.  Even one quick line could be all we need to get through the current challenge.  Even to hear your voice on a voicemail gives us strength.  And as hope promises, life outside these doors went on as normal.  That said even more duties filled my calendar.  Without a reality show camera crew following me around I couldn’t document it all.  Though I do await my call from Steven Spielberg to start working on my screenplay.  I have contacted Matthew McConaughey to play Ken (for his rippling abs and cute little dimples) and Sandra Bullock to play me (Ken’s choice).  All I’ve got back so far is a restraining order…jk.  Grandbaby Mia of course will play herself.  Those who know her will understand and smile.  I love her so much.  Watching her personality and life develop has been the sunshine of my soul.  Being there when she was born and being the first to hold her I believe creates a beautiful spiritual bond.  I miss having my regular Nana duties as often as I did have with all my babies.

Thanks for hanging in long enough to get here and reading my rant.  To update on Ken…he is showing his incredible determination and fighting back hard.  I am extremely proud of him.  We went through what we thought was strep throat a few weeks ago like we needed that on top of an already sore and swollen throat.  Then we got the results back and it wasn’t strep.  Just cancer giving us one last (hopefully) kick in the stomach.   His neck gets very puffy which looks alarming but the doctors say it’s normal.  Treatments (radiation and chemo) beat him down to a cellular DNA level.  Kind of like hitting CTRL/ALT/DEL on your computer and praying that it boots back up like normal.  Now his body has to fight to reconnect the dots.  I know he is frustrated at the setbacks.  But the doctors say he is miles ahead of other patients and doing well.  Normal…huh… ‘I choose to dislike that word’ (I teach my children that they cannot use the word ‘hate’.  We ‘choose to dislike’ things! Try it sometime).  His voice is raspy and we have to pace his use of it.  Email and text messages are greatly accepted.  We have to always remember to have water around now with no saliva glands.  Even a walk around the block caught us off guard with that need one day.  In the food world we have had some good progress in what he could get down.  But this last setback has us back to Ensure mostly again.  To those who know his stubborn side he forced down a very goopy small sub a few weeks ago because he misses his ‘Dagwood’ sandwiches so much! He has been very tired lately so I tiptoe around a lot.  But he does have some very incredible moments as well.  By mid afternoon his spunk starts to return and I see a glimpse of my Kenny I miss so much.  For every bad there is a good in life so I look forward to the next round of good. 

Some days I sit and wonder what it would be like to find a FAST FORWARD button on this journey, as I long to get back to a more (new) ‘normal’ life.  As we know these don’t exist and we must face these journeys and take note of the lessons learned.

HANG IN THERE KENNY! 

WE ALL APPRECIATE YOU AND ARE STANDING ON THE SIDELINES CHEERING YOU ON! 

LUWAMH SAMMY!

Meet Teddy!

Greetings!

Teddy Radiation Shooters


OK...I've held off long enough but have the backing & support of my BFAC supporters to launch the official 'Who the heck is Teddy' pictures.

They finally show what we've been up against all along.  And it wasn't pretty or fun.  Feel free to leave now if you're squeemish...unfortunately, we didn't have that choice so please stick around.





Teddy - Being taken away!
For those who remember
our earlier garden gnome
comment!



As much as we have spoke of our battle all along of being up against Teddy, I also believe the fact that without him things would have been much different (sorry TJE!).  Had Teddy not shown his 'ugly' face, Ken would have been subjected to several rounds of 10 days of antibiotics followed by a week to see if it worked, followed by another round of something different and then again another round.  And yet another of 'oh it's just a sore throat'.  But, because he stuck out his 'head' and said hello, the Doctors had no choice but to accept that something was definitely wrong.  The pictures also show how agressive he was.  As I've mentioned in previous posts, I used these and many pictures to convince the Doctors to move quickly and as you've read, they did.  To that I am very thankful.



So...here goes.  Put on your seatbelts and keep your hands and feet inside the car during the ride and hang on tight.  Flash photography is allowed.!! 

This is what Stage 3 tonsil cancer has to offer.



Teddy - 11/02/11
1st visit to Dr. Conlin
Cute little blister! back left



Teddy - 11/06/11
See how fast he's growing!
Day before biopsy surgery.
Doesn't he look like he has an Angel
head and wings?!



Teddy - 11/08/11
Day after biopsy.
Black is from cauterizing because of
low platelet count to stop bleeding.
Starting to push over epiglottis into throat
so worried about breathing.

Teddy's Butt - from inside Ken's throat
using Mr. Endoscope - much prettier!
Horseshoe shape thingy has to do with
his larynx and looks good.  2 slits above
that are his vocal cords - they get lots
of work during a normal day :)

Teddy - 12/03/11
Day before treatments
Nasty dude!

Teddy - 12/07/11
After 1 chemo and 2 rad. treatments!
Hah!! Take that!



Teddy - 01/17/12
1 week of treatments left.
Painful thrush infection. and
radiation burns.
But look at Teddy on the left!



Teddy - 01/31/12
1 week after treatments.
Most red spots are burns.
But...Teddy looks all sealed over!

Teddy - 02/29/12 - RIP??!!
Look at the Angelic sunrays above
him per my initial comment of him :)
Tongue is actually getting a healthy
colour again too - hence the taste
buds returning!

So there you have it!  17 weeks of Teddy's short life.  Yes...I said 17.  Time flies...thankfully.  And that's from his 1st knock at the door - welcome less than a telemarketer at dinnertime.  We're sure he was manifesting much long before that.  Not a rollercoaster fan anymore.  I've had my share of this ride.  The numbness can wear off any time now thank you very much.

Thanks to N (aka LOTL) at BFAC for giving me the voice and to know it was time.  Cheers to you.

xx
S



5 Weeks Post Treatment

Here is a summary of where we are at in a nutshell after 5 weeks:

Chemo – graduated 3 weeks ago – very impressed with progress and skin condition (go Ally). No future appointments!

Radiation – 1^st follow up appointment this Friday, March 2^nd to see how things have healed

Teeth – appointment this Friday too, a few struggles with the nightly fluoride tray routine, and a couple of teeth have little chips out of them so get to figure that out.  Future appointments every 3 months for 5 years!

Hair – lost a strip between earlobes at the back (starting to come back), eyelashes have thinned out, hair on back of hands & fingers gone, facial hair all gone now - shaved off the last recently - never seen Kenny without it!! Only need to shave on the sides for now - nice baby soft skin!  

Skin – thanks to our aloe vera habit, very very nice and soft.  Looks like a nice tropical tan – wish it was!

Hydration – hard to control, always need a water bottle nearby

Mouth – a few lingering mouth sores, Teddy’s peep hole looks good and closed over

Voice - much better than the whisper it got too, only gets raspy when he talks too much (which is a lot - hee)

Nausea -  none

Tossing cookies – only once in Emerg when they gave 2 Tylenol & 3 Advil to get the fever down

Pain – Always a mild sore throat

Medication – off all the heavy duty stuff, occasional Tylenol or Ibuprofin

General well-being feeling – Good days & bad days, good mornings & bad mornings, naps are good (but we should all do that)

Weight – since 1^st day of treatment Dec.5^th/11 – most dropped is 11 pounds (but had lost a bit more before treatment)

Food – still need the Ensure every day, porridge & fruit to start the day, soup is good, anything else has to be very moist and/or mushy – need lots of water to get things down

Taste buds – slowly noticing improvements – some foods sting (eg. mustard & summer sausage – had to try!)

Blog Comments – Appreciated

E-mail / Text Support - Great to hear from people who don’t do the blog thing

Spiritual Support – We can’t have the resentment mentality of why us/why now.  That resolves nothing.  The ‘everything happening for a reason’ phrase is a little hard to take some days.  So we look to learn from the lesson presented and pay it forward to others.

xx

S

World Cancer Day - February 4th

Feb. 4th is World Cancer Day! Thanks to everyone fighting in our corner.

Check out the videos here...phew!!

http://www.fightback.ca/

xx

S

So now what?

Well, we did it!  We are now 1 week past radiation treatments and that great RING THAT BELL moment.  It has been a normal rollercoaster ride / one-step forward / two-steps back kind of week for us. 

Ken’s had a butt kicking.  From what we’ve seen and read there’s a lot worse out there we could have had.  He’s tough and kicked right back.  Radiation effects keep going for about 4 weeks.  Healing starts before then once your body realizes you’re not zapping it every day!  Ken’s throat and mouth sores are getting better but are still challending.  Keeping on top of pain management is time consuming to do and document.  At times it’s confusing for what to use for what symptom.   Sleeping is broken due to the mucous that develops as his throat is healing.  The body produces more mucous to do so.  As the saliva glands were compromised during treatment it’s thicker.   Ken has to ‘get rid of it’ several times during the night.  He kind of gurgled in his sleep for a while so I slept lightly keeping an eye on my patient!  I’ve put a cold air humidifier in the bedroom.  This helps a lot and I’m getting used to its sound.   We had a few days that were hard to get Ensure and water into him so his weight dipped a bit.  That is better now and porridge is back on the menu too.  A fever spike on the weekend led us to getting an antibiotic in case there was an infection.  This was nice to get as last time we had it in December, it cleared up the mouth sores.   His voice that he loves to use is soft & raspy.  What a great reason to have someone whisper in my ear!  I say ‘pardon’ a lot.  It's funny to notice when someone whispers you tend to whisper back.  It has definitely improved in a short time. 

Kenny emerged today just like the groundhog ready for spring to be just around the corner.  We will at some point learn to adjust to the ‘new normal’.  It’s up to us to re-define how that looks.  What was has changed.  For now, we’re not there yet.  We are glad to be done the London commute everyday and be done with the zaps for sure.  

 As mentioned in an earlier post we have follow up appointments with Dr. Kuruvilla (Chemotherapy Doctor) this month to check blood work / Dr. Read (Radiation Doctor) in March.  That gives Ken’s mouth and throat time to heal and see how things look and feel.  From what we are excited to see, the Teddy ‘site’ is healing over nicely.  The Doctors also couldn’t feel Lenny from a neck exam.  A scan is only done if something doesn’t look right.  At this stage, it would be too soon and only show swelling and scar tissue as things heal.  That could alarm some to thinking it was the tumour still hanging around.  So…

To answer the question at the start:  So now what?  Unfortunately, the chapter we just closed doesn’t have a magic cure button…time to heal.  Time to wait and see. 

xx

S

Cancer Blog Community - Blog For A Cure

I wanted to share a website for you to check out. 

http://www.blogforacure.com/

It has been a great place to find information from people in the trenches with us.  There are literally thousands of blogs in there by people at various stages in their journey.  Not just survivors but also family members looking for anything to carry them through.

It can be broken down into types of cancer, stage of cancer, location of blogger, etc.

Click on the 'members' link, 'type of cancer', then there is a drop down box 'select cancer type'. 

You can also click on the 'members' link, then 'location directory' and break things down by area.

You can also narrow it down by the kind of chemo drug, etc.

Right now there are 111 Tonsil blogs.  We started by looking for people currently going through treatments. Very interested in people just out of treatment to see how they're doing now.  Of course, we did gravitate as well to our fellow Canadians (who find Tim Horton's icecaps helpful!!).

It is another area where we get and give a lot of support and encouragement ourselves.  We've even found someone recently through his treatment from SW Ontario whose wife is a Realtor! 

It made us appreciate the journey we got dealt after reading what other people have gone through.  Like the sign in town that reads:  "If everybody threw their problems in the middle of the table...you would want yours back".

If you or someone you know has a cancer question or like us lost in the storm looking for answers and hope...check it out.  You'll be glad you did.  I wish we had found it sooner and interacted more often.  I'm coming across lots of tips and tricks I wish we had for a more preventative approach to side effects.  We have a countertop full of 'something for this and something for that' ... but they're all drugs just to fix something now that it's broken.  I say, if there's a way to stop it from being broken in the first place...go for it!!  We've already paid it forward to many at LRCP during our treatments who wonder what the slimy stuff is I put on Ken's face as soon as he is done.  Even the Dr.'s and technicians comment on how well his skin looks so I hope they pass it on as well.  It's all about helping each other.

Keep in mind, as we do, everyone's journey is unique.  Side effects may be similar or not at all similar.  Hypochondriacs beware!  You don't have to try everything or believe everything you read. 

Do what feels right for you.  If it doesn't sit right, listen to your little voice.  Don't we all wish we did that more often??

xx

S

RING THAT BELL !!! Wed., January 25th, 2012, 1:51pm

Last Day - Bell Ringing !!



Woo Hoo!!



Thanks everyone!  That's a rap.  Let's go home!!



Trevor & Ken

Ring the Bell with Kenny & Sammy

Update – The light at the end of the tunnel is getting brighter!

Wow.  What a ride.  As I post this we have 2 … yes 2 … radiation treatments to go.  Where did the time go?  Thankfully – fast!  Yet the last 3 or 4 are full of what if’s more than anticipation.  What if the mask is too big?  What if he can’t keep the weight up for a few more days? What if we need to stop everything for a new mask?  What if…

We have an extra prescription rinse now for a bit of a thrush infection.  Hard to tell what is a mouth sore and what is thrush.  The numbing gel works well too. Ken is still being a trooper eating his porridge and fruit for breakfast.  Goopy pasta/sauce working not bad but hard to swallow.  Big push with Ensure  too.  Funny enough taste buds are picking up a few things other than coffee and chocolate.  We’re told it can go up and down like that.  He can’t wait to taste again. 

We cracked open the liquid codeine Ken’s been staring at this weekend.  The dose is the same as a Tylenol 3 (without the Tylenol) so not as bad as it sounds.  It worked well.  He’s been getting by with the rinses and regular strength Tylenol.  Weight has been dipping a bit in our morning weigh in’s but we’re able to plump him up during the day.

Monday we had radiation treatment #33 and our regular appointment with Dr. Read the radiation oncologist.  She calls Ken her poster child for his determination and progress with maintaining the weight and not needing a feeding tube or 2^nd mask.  She can tell the difference of a patient with a positive attitude and a good caregiver! Everyone comments on how good his skin is holding up…thanks to Ally and our homemade umm ‘lotion’.  We won’t see Dr. Read now for 4 weeks.  That gives everything time to heal.  Then they take a good look inside and out.  If everything looks good, we go back in a month or so.  If not, we go back sooner.  They can typically tell what’s going on by looking and feeling.  Anything out of the ordinary and a new CT scan would be done.  Dr. Read thinks based on Ken’s weight and size of his neck, we’ll be able to tell without a scan.  We got some repeat prescriptions ‘just in case’ we needed them before we go back.  Radiation keeps working on everything for about 4 weeks after your last treatment.  It takes about a week and a half to notice changes and for your body to kick in and start healing.  As for Teddy...it's hard to get a good picture of him lately.  Let's just say the area looks more like a Bin Laden cave - empty - and is expected to heal over.  And Lenny...Dr's can't feel anything abnormal in his neck anymore.  So here's to hoping!

As you know we had taken on the approach that we were up for this fight.  It may be a 12 rounder, or we might knock it out in 10 rounds.  While we are not drinking raw eggs, we prepared like Rocky and Muhammad Ali combined.  Kenny, I will be your Adrian any day.  The other encouraging thing is that you were all in our corner, and helped us tie up the boxing gloves. 

Thank you.

Xx

S

Chemotherapy – Round 3 … #cancelled



Chemo Bell

Chemo #2 is just another entry / memory.  Side effects were as round #1.  So we are thankful for that.  Everywhere we went people (even the Dr.) warned us how it would be so much worse and to ‘get ready for it’!?.  Good thing we choose to believe to go with the flow and accept what happens.  Take your meds as prescribed and don’t wait for side effects to happen and then try to catch up.  It won’t work.  As the person who watches what happens, Ken and his body took it even better with round 2.  Maybe it was the 80% dosage.  Maybe his body thought ‘OK fine…you gave me this before, let’s get it over with’.  A few days after chemo is a bit of a dip as the steroids in the anti-nausea pills wear off.  Luckily it happened on a weekend so there’s some extra time to adjust.  Just makes him a little more tired. 





Last Friday was a big day.  First stop blood work to see what Chemo #2 did.  Then Chemo Dr., radiation and dentist.  The chemo clinic was quiet that day.  Not so many new people as we usually see.  They say on a regular Wed. and Thurs. clinic, each clinic sees an average of 100 people.  There are 4 clinics doing this.  The nurse told us we were at our worst time for pain.  It was kind of funny to note that we were excited to hear this…just to know it will get better from here. 



Chemo Angels



Then Dr. Kuruvilla the chemo Dr. came in.  We were basically there to decide how Chemo #3 would proceed on February 1^st.  She spoke a bit about blood work.  She gave us a bunch of text book facts of things / studies.  And all we could think was ‘oh…we’re going ahead with #3 – well we knew it was coming – bring it on’.  But, then she finished with ‘based on talk with her colleagues, they don’t feel that chemo #3 is necessary – 2 will be fine based on his progress and timing, etc.  Chemo works better during the radiation period as it softens the tissues for the radiation to work better.  Since our last radiation is Jan. 25^th, we would be done before the chemo could be fit it.  They felt Ken’s blood counts wouldn’t be where they needed them (Platelets = 84 / ANC = low normal).  We were told approx. 40% of people don’t get the 3^rd chemo in for this type of treatment.  We are now booked for a follow up appointment to see how things are going in February! YEAH!!

I commented on the Bell – What? We don’t get to ring the chemo bell?  That’s our rite of passage!  We worked hard to get here.  Oh well.  The outcome is good enough I guess.  We’ll still have our radiation bell to ring! 



True RE/MAX-er sporting
his stylish bag & water
bottle.  Have a hat too
but baby-face Ken likes his
gangsta hat! Yes, there is
lots of hair under it!





Smashingly happy ‘V’…smashing it big time!

Xx

S