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

The Bell



The Bell outside Radiation


On our first visit to LRCP we heard a bell ring.  Everybody started clapping and cheered.  As newbies we didn’t know what it meant but the energy was awesome so we followed along every time we heard it.  For a brief moment we thought we were at a timeshare vacation meeting and they had a new member!! 

We found out that a patient gets to ring the bell as they come out of their last treatment session.  There is one outside the radiation department and one outside the chemotherapy department.  They have beautiful angel figurines around them.

We can’t wait to ring and hear our bell.  We will get to do it twice…once for each department.  They will be on separate special days later in January.  Our cheering section will be loud and waiting with cameras rolling.



New Bell outside Radiation
this week



Never have we wished for time to speed up in this already fast paced world.  But for this…we do.

Xx

S

Treatments – Day 5, 6, 7

Greetings and welcome back!

We’ve been sailing along with radiation treatments Friday, Monday and today, Tuesday.  It was nice to get the weekend off from treatments, masks, and driving.  Thanks to J.B.W. for driving on Friday.  I was glad it was him driving home in the dark, snow and black ice and not me!  We dropped off a Stratford goody bag for our Chemo Nurse Alison (complete with Justin Bieber map for her daughter).  Hope that gives us brownie points for our next visit to chemo on Dec. 28^th.  Thanks to D.L. for driving Monday.  Ken was glad to catch up with a good friend.  They got to see the air ambulance helicopter taking off from the landing pad.  I giggle to picture Ken trying to figure out the camera on his Blackberry.  Very proud moment!!  Ken met with Dr. Read the Radiation Oncologist.  We meet her every Monday now.  This was the first appointment since treatments started.  Things are going well.  The dietician also stopped by and gave some advice on keeping the weight up with protein, etc.  Ken wrote on his ‘how are you feeling chart’ that his throat pain was a ‘2’ so they tried to push pain medication at him but he declined.  They think it’s sore because it’s red…but it’s no worse than the sore throat from before and something I think he’s used to.  He had some sugary treats at a family Christmas gathering Sunday and he noticed that didn’t feel too good with Teddy.  Ken’s appetite and energy is doing better and he’s not as tired as the days after chemo last Monday.  Today, Tuesday, was a normal visit.  Had lots of food today to fatten him up per Doctor’s orders.  Harder than it sounds because we don’t eat like that regularly.  The radiation mask made a little dent on his nose again…but he’s getting used to the ‘uncomfortable little Devil’.   It should be normal visits for the rest of the week. Weather looks great for driving!

P.S.  After all this talk about shrinking "Teddy", we forgot to mention "Lenny".  We have to shrink the lymph node tumour too.  So that's your visualization homework for today :)

xx
S&K

Treatments – Day 4 - Thursday

Ken wanted to explain some technical happenings from yesterday and today.  He noticed that it took a few minutes longer while on the table before they did the procedure.  They explained that they were just making an adjustment.  Interestingly, they line you up with a little laser that aims at your chest.  That connects with the tattoo we described before that he got when they made the mask.  It is basically a black mark to center your body.  Today, they described to him what the images they look at mean.  They showed him a colour chart that shows where they concentrate most of the radiation and the least amount.  He thought that was cool.  His throat is sore today.  He was a little dizzy after the procedure but just for a minute or so.  Other than that he is doing quite well.  Thanks to M.K. for driving Ken today.  I had to take Matthew to the Dr...because I haven’t been to enough of them in the last little while.

Live large, laugh often and love always.

xx

S

Treatments – Day 3 - Wednesday - 12/7/11

Day #3 over with!  Today’s appointment was 2:20pm.  All is going well.  Two different sets of anti-nausea pills to take in the morning.  Last set is tomorrow morning.  No more until next chemo treatment on December 28^th!  Thankfully, the pills have been working and no problems with nausea.  Like yesterday, we walked right in and got the treatment.  Ken uses different songs to escape during treatment.  Today was ‘Eye of the Tiger, Rocky’.  I stood in my Momma Lion spot watching again (with the song playing on the iPad for support). 

The patient was a little tired this afternoon.  They warned him that the steroid / superman juice from chemo day will be wearing off!  Yesterday, he was on the go for sure.  He felt a bit of a sting on his skin when leaving because the cold wind hit it. We forgot his scarf.  Note to self to have extra one in the car.  Once we were in the car, I put on some aloe vera gel (home-made so we know what’s in it) for the ride home.  We were told not to wait until we get home.  It’s like a sunburn that you don’t feel until after you leave the beach.   His throat was a little tender today but nothing more than he’s had since this all started.

He does occasionally have these cute little hiccups I’ve never heard before.  A quick Google search says they are from one of the chemo day iv bags that is also the same drug as one of the pills he took yesterday and today!

Oh yes, I forgot to mention in yesterday’s post.  I took my usual Teddy picture last night.  And I am very pleased to announce that I can see a difference.  Figuring I was too close to the topic, I emailed it to Ken’s brother who confirmed he saw it too.  SO KEEP UP ALL THE HAPPY THOUGHTS and we can shrink Teddy together!

xx

K&S

Treatments – Day 2 - Tuesday - 12/6/11

Sleep last night was better than the day before treatments started.  Ken did have a big night sweat.  Hopefully, he was sweating out the toxins, extra fluids, etc.  Let’s just say, I washed everything.  The sheets looked like the chalk outline on CSI (and he was fully clothed because he's always cold).  And the pillow, as a funny comedian says, looked like a civil war bandage.  “Better out than in” as ‘Shrek’ would say!

Radiation only today - 5:05pm appointment.  That gave us a chance to have a somewhat normal day at work/home.  We had a friend offer to drive this time that has been through a similar experience a few years ago.  It was very nice to get first hand tips and tricks.  Google can put too many thoughts in your head sometimes.  The clinic was nearly empty and quiet compared to appointments earlier in the day.  We got our new schedule until Monday.  Then we could go back to the 2^nd waiting area already!  That was awesome!  Boom.  It was Ken’s turn and off he went.  I went to my normal peek over the shoulder spot and showed our friend what things looked like from the other side of the table.  We were in and out in no time.  Very nice.  I’ll take more days like this!  Watched a funny movie when we got home to have a bunch of much needed laughter.  Oh, yes, had to do our daily fluoride tray routine before we nodded off from the movie.  I’m sure that will become second nature sooner than later.

Treatments begin – Day 1 - Monday - 12/5/11

This was a long day.  It was good to finally get the ball rolling instead of wondering what Teddy was up to.  It was our turn to take charge!

We got to the chemotherapy clinic for 10:30 a.m. and received our schedule for the next visit.  Once again, the building was full of people waiting with their pagers for their turn.  We were greeted by our nurse for the day, Alison.  We could choose between a bed along the wall or a recliner by the window…so we chose window since our treatment would be 4.5 hours long.  She put the iv needle in…breathe Ken J.  Ken took the 1^st day pill of his ‘Emend’ anti-nausea pill.  It was smaller that it looked in the package so he was glad!  It was cool in there because it’s more comfortable for anyone who is nauseous.  Also, the nurses wear special lab coats for their protection in case there is a chemo drug mishap, they are impenetrable.  This makes it hotter for them to work in.  A steady stream of people came and went for smaller doses, etc.  Alison sat with us for quite a while giving us the tips and tricks of what to expect.  She did a great job and we were very relaxed and comfortable.  There was a picture on the wall in our spot with a whole bunch of hot air balloons.  So as true RE/MAX above the crowd people we knew that was a good sign!  The 1^st iv bag was just regular liquid to hydrate.  Another one with that was for nausea…with a steroid mix.  Then another to stimulate his kidneys so lots of bathroom trips.  Our chemo drug is Cisplatin which tends to be hard on the kidneys so lots of liquids are important.   It is considered ‘high dose’ so I’m glad we only get it 3 times.  Then at 1:25 pm, it began.  The chemo bag was attached.  We were talking with Jim, our social worker, at the time.  It was distracting to try to listen to him.  The chemo drip was very fast and loud…there was no turning back.  Here we go boys and girls hang on for the ride.  It emptied very fast compared to the earlier bags.  Then another water  series to top off the cocktail.  I pictured ‘in with the good, out with the bad’.  Ken pictured ‘red wine’.  Time seemed to go fast.  Stopped at the pharmacy for the after chemo pills for nausea.  Then off to radiation.

Radiation was for 3:55pm.  Ken took an ‘ativan’ to relax because it was supposed to be an extra long treatment for the 1^st one.  Then we waited and waited.  Ken nodded off from said pill as expected, but appointments were behind schedule.  By the time the pager went off for our turn it was almost 2 hours later.  Needless to say, the pill had worn off by then.  They let me go back to the next waiting room with him.  Then it was our turn and off Ken went for new experience #2 of the day.  Me being the curious (and concerned) one stood in the hallway and peeked over the technician’s shoulder at the screen.  Really cool high tech stuff watching Ken’s neck and head while they zoomed in with their precision points.  In about 10 minutes they were finished!  Yeah.  So not the long one we expected.  The technician brought me back into the room where Ken was.  And there was my brave friend on the table with his mask.  Let’s call him ‘Marvin’.  Once he was up, they gave us the do’s and don’ts for what to put on his skin and what not to put on his skin.  Told him to eat all he wants because the treatment is very hard on the throat and liquids will be your routine in a few weeks possibly…so bulk up now!  With that permission, Ken had me stop on the way home at Burger King for an Angry Whopper, Fries and a milkshake.  Not his regular meal routine so he may pay for this after eating it!!

It was a long drive home.  It had been raining and was dark and dreary all day.  As we left London, the rain changed to snow.  Not the pretty fluffy kind.  The kind the blows straight into the headlights ALL the way home.  Nice to get home ~8:30pm!

Friday – 11/25/11 - Pickup dental trays, fluoride and a 1 hour chemo training

We met with Kim our Dental Assistant who made sure the dental trays for the fluoride fit ok.  She showed us how to do the treatment.  Every night for 4 minutes…for life.  I was going to take a picture for our journal with the trays in.  She knows Ken is a Montreal Canadiens fan from our 1^st visit so she grabbed a Toronto Maple Leafs flag for the picture!  She said that’s why she put him in the little kids’ room!  We met Dr. Soskin again while we were making our next appointment.  She reminded us about the nausea side effects and to take the pills they give us no matter how you are feeling because it’s easier to stay on top of it that way.  We’ve heard that a lot!

Then we only had 10 minutes to get all the way across the hospital for chemo training.  Our facilitator Peggy was there too.  The room was full of people just starting chemo or a few weeks in.  The chemo nurse Jeannette did a great presentation and they gave us a booklet with the do’s and don’ts to follow.  I tried to keep a straight face during the sexuality topic when the older gentleman across from us made some funny comments to his caregiver with him.

After that, Peggy took us to the chemo department where you get your treatments.  It has some nice big windows so we won’t be stuck inside without a view all day.  Then, we stopped at the pharmacy.  It’s right beside the chemo department.  We picked up the fluoride for the dental trays ($25. for 3 month supply) and a drug to be taken with chemo (Emend) for nausea…3 pills $110.00!  The pharmacist told Peggy she had ‘no orders’ for Monday and that she should talk to Dr. Kuruvilla.  We weren’t sure what they were talking about.  As we were leaving the parking lot Peggy called and told us that they had booked our 1^st appointment for the 28^th in error.  It didn’t give them enough time to do the radiation planning from the ‘mask/mri’ day.  So our new start date is Monday, December 5^th.  We were all psyched up for Monday to get the ball rolling and shrink Teddy.  But, it was nice to have a half normal week with no medical appointments and to spend some time letting the events of the last 3½ weeks settle in.

Tuesday - 11/22/11 – Mask making / CT Simulator / MRI Day

Today started with an iv for the CT and MRI.  Then we were off to the CT Simulator room to make the radiation mask.  As I walked in the room, one of the technicians said ‘hey, she can’t come in here’ and I’m like ‘woops’.  Then he said ‘with that hockey shirt on’ Phew.  Of course I had my Habs rally shirt on again.  With Ken lying on the CT table, they took a mesh looking plastic sheet that has been in warm water.  Then they placed it over Ken’s head and shoulders.  Then it was shaped around his face, etc.  They put cold towels on it after that.  Once that is done, they place it in ice water to cool it down and let it harden.  Then they put the mask back on and attached it to the table.  Ken and I are both claustrophobic so it was not fun to be watching or having it done.  I reminded him to breathe.  The technicians told him to go to his happy place at a Justin Bieber concert once they heard we were from Stratford!  Then I had to leave while they did the simulation for radiation.  The technicians were all very good.  They needed to put a little tattoo (dot) on his chest for later to line him up during treatments.  They gave me an appointment card for the 1^st appointment – Nov. 28^th.  Wow  that’s next Monday!

We met Peggy who is our facilitator.  She like our ombudsman between all departments and makes sure we get everything we need.  The MRI wasn’t until a few hours later so they capped off the iv so we didn’t have to drag the pole and bag around with us.  We escaped across the street to East Side Mario’s for lunch.  Ken’s hand with the iv got us a few looks! 

After lunch we sat in the LRCP waiting area in the lower level.  It’s a nice atrium area where you wait for people having treatments, etc.  The Canadian Cancer Society provides free coffee, tea and cookies! Then two older gentleman came in and setup to play some music on a guitar and bass violin.  They were very good and it was relaxing.  I visited the bookstore / library where you can check out books etc. all to do with cancer.

The MRI appointment was next.  We were both nervous about it for sure.  The department was a long way from the LRCP building through the hospital.  We had no map this time so a few friendly workers directed us along the way with our lost looks on our faces.  We filled out another clipboard form.  The MRI was to take 45 minutes.  It was a long emotional wait in the waiting area.  During the appointment they brought out the mask made earlier in the day.  We didn’t know that was going to happen.  Ken had to have it on during the scan.  He was given a ball to hold.  If he needed assistance, he was to squeeze the ball and they would take him out of the machine.  BUT, they would have to start over again it he did.  So he didn’t.  He did great.  I was very proud of him for what he had been through that day.  As the Momma Lion you want to help your babies all you can.  I was very glad to see him come out.  He was definitely ready to get out of the hospital for the day!

Next appointment - Friday the 25^th to pickup dental trays, fluoride and a 1 hour chemo training session.

Friday - 11/18/11 - Meet the new additions to the Kenny & Sammy team

Reality got one step closer today…as soon as the sliding doors opened into the London Regional Cancer Program (LRCP) building.  We started out in the main reception area.  That’s where all the newbies gather and fill out yet another clipboard form.  We also got an information package.  As Ken was filling out his form, it started.  One little sniffle…no you’re fine…then another.  Then big tears quietly rolling down my cheeks.  Ken looked over and gave me a nice stroke on the back and asked ‘what’s wrong’.  All I could say was ‘I don’t know…I’m leaking!’  I really just wanted to scream ‘we shouldn’t be here’!  Everybody was staring at their info package with a deer in the headlight look! Big breath.  All good.  And so started a very full day of information overload.  Starting from 9am-4:30pm.

Our new team:

Primary Nurse:  Marg – gave us the run down on what to expect during the day and who we would be meeting.  She coordinated all the appointments for the day and got us where we were supposed to go.

Resident:  Dr. Jenna Theriault – Repeated our story to her.  She checked out Teddy and brought in Mr. Endoscope and the monitor. She took my colour printouts of Teddy’s progression.  I took pictures (almost) every day so we/they could see how it was growing.  Kind of a ‘see…get that thing out of there’ photo journal.

Radiation Oncologist:  Dr. Nancy Read – came in with Dr. John Yoo (surgeon…he’s in the robot kid clip from last posting) & Dr. Theriault.  Did the scope so everybody could check things out together.  They liked how things looked and where Teddy was sitting.  Dr. Yoo confirmed that surgery wouldn’t be done.  We would go straight to treatments.  They all liked my pictures.

Everybody left but Dr. Read.  She went over what treatments they recommended.  Radiation 5 times/week for 7 weeks.  Chemotherapy (Cisplatin) on Monday of week 1, 4 & 7.  If Ken’s platelets were still low, chemo may have to be once a week because they have to reduce the dosage.  She explained the side effects of both.  I’ll spare you what they are here.  Feel free to Google on your own.  We would have to come back for a mask fitting and an MRI.  We were given a prescription for Ativan to relax before both.  Treatments would probably start 2 weeks from today.

Sam – An ear, nose, throat Dr. came in and got Ken’s consent to have an extra vial of blood taken to participate in a Head & Neck study checking for ‘identification of circulating tumour cells’.  Dr. Nichols & Dr. Yoo are part of that study.  Hopefully, we can be a part of helping people in the future with what they find out.

Everybody left so we had some lunch in our little exam room.  Ken left the room for a few minutes and Nurse Marg came in with a sample radiation mask.  I was like ‘ok…you better take that out until Ken comes back because he hasn’t seen one yet’.  I had seen one online but Ken didn’t want to know until he needed to.  When Ken was back she brought it back in.  She also had our appointments for the MRI, etc.  She went over side effects again and what to expect for the rest of the day.  Next stop, the dentist!  Yes, they have their own dental department.

Dentist:  Dr. G.D. Soskin – This was quite the tour to get to the dental clinic.  It is in the hospital section ALL the way at the other end on the main floor.  Luckily, Marg sent us with a map!  Radiation in the head area is very hard on your teeth and jaws.  It affects your saliva glands so you can't rinse the food away from your teeth the way you usually do.  Ken had an xray taken in a very modern stand up kind of machine.  If any teeth looked questionable, they would need to be pulled before treatments started.  Luckily all were fine.  She did want him to have a cleaning with his regular Dentist (Dr. Mark Straus) in the next few days.  The Dental Assistant, Kim, made impressions of Ken’s top and bottom teeth.  He will have to have fluoride trays every night for life (4 minutes each time) starting the night before the 1^st treatment!!  He’ll also have to keep a water bottle with him for the dry mouth and to keep the food out.  We will see Dr. Soskin every few weeks during treatments and every 3 months for 5 years.  Luckily OHIP covers those appointments (but not the trays or the fluoride).  Kim and Dr. Soskin were very nice and we got some great advice and had a few laughs along the way.

Then, we were off for blood work.  No one was waiting so that didn’t take too long. 

Medical Oncologist - Dr. Sara Kuruvilla – This is our chemo Dr.  She went over what to expect with treatments and when they would happen.  Lots of fluids are important.  Chemo would be 4½-6 hours each time.    We were told to watch Ken’s temperature.  Anything 38 degrees for an hour or anything 38.5 and up is a trip to emergency because his body will be trying to fight something and he’ll need antibiotics.  We now have a “Fever Card” to get us to the front of the line if that happens (no Amy, you can’t use it J).   She said I was famous because my pictures were circulating around the department.  They wondered what type of camera I used…just my good old Blackberry!

GOOD NEWS – Ken’s platelets were 129! 

Absolutely love how smooth things run at LRCP.  We barely wait for anything.  Everyone is very helpful and gives us lots of good information and advice.  We get a pager when we get there that buzzes when they're ready for us.

So, in summary, all of Ken’s caregivers are female!  I like that and so does he probably J.

HOW WE MET “THE ROBOT KID” – Teddy & Kenny – The Next Step

Monday - 11/14/11 – Our first trip to the hospital in London

http://www.lhsc.on.ca/

We had an appointment with Dr. Anthony Nichols.  He does amazing work with head and neck surgery.  Of course we had checked him out online before we got there and were very excited to meet him.  We did the usual check in. Receptionist was very helpful.  R.N. Sue made us feel more at ease.  I had my rally shirt on again.  Filled out yet another clipboard form.  Met with Sr. Resident  and repeated the same how did you get here story again.  He went out to consult with Dr. Nichols and check the CT Scan / biopsy results from Stratford.  Then Dr. Nichols came in.  He confirmed that we are facing a 4cm tumour on the tonsil and a 2 cm tumour on the lymph node.  That puts Ken in “stage 3” as they grade Cancer.  But ‘just’ into stage 3.  Should that make us feel better?!  Yes.  Better than a 4!  Oh and yes, Mr. Endoscope came out for another visit…but with a little freezing this time!  And complete with a computer monitor for us to watch at the same time!  Unfortunately, we didn’t qualify for the robotics surgery.  There are strict guidelines and based on the size of the tumour it wouldn’t work.  He would also still need radiation (etc.) for the lymph node so the thought was to try to shrink without the surgery.  We were to be referred to the Cancer Program and would hear from them by the end of the week.  He explained chemotherapy and radiation and lots of other information.  I took lots of notes.  And just like last time…we were off to another step.

London Regional Cancer Program:

http://www.lhsc.on.ca/About_Us/LRCP/

Dr. Nichols:

http://www.ctv.ca/CTVNews/TopStories/20110215/lhsc-canadas-first-robot-throat-cancer-surgery-110215/

Next post – MEET THE NEW ADDITIONS TO THE KENNY & SAMMY TEAM

Surgery day

Monday – 11/7/11 – Sorry there is no short version of this day

The big day!  We put on our #Habs rally shirts (another story on its own).  Ken’s brother Trev came for support.  Had to be at hospital for 12:30pm prep.  Surgery set for 2pm.  Couldn’t drink or eat after midnight Sunday.  Not pleasant for Ken who loves water through the night and a lot during the day.  Found out they are only taking a biopsy of tonsil and tumour.  Based on what the CT scan showed, they aren’t removing anything.  A pathologist was on standby to make sure Dr. Conlin took a big enough sample to test.  It usually takes 7-10 days for results but calling for fast track.  Once Ken had his iv in I was able to go back and keep him company.  He looked so cute in his blue hospital ‘hat’ and sleepy with his ‘Ativan’ J.  They took more blood tests.  Apparently his platelet counts were low last time (only 61, normal is 150-400).  Anything around 50 and they wouldn’t do the surgery.  Good news.  They were up to 75.  Again, impressed with the new section of the hospital compared to the old one.  The patient before us took longer so 2pm surgery turned into 3:30pm when they finally took him in.  The OR nurse turned out to be a past client so that was comforting when she took him away.  Thank goodness for texts and BBM so I could keep in touch with the outside world wondering what was taking so long.  Back in the waiting room was a long wait.  Trev, Sarah and Auntie Charm were there to keep me company.  One by one other people waiting left with their loved one.  But no Kenny.  Then we were down to the last few groups.  We were all like vultures when the door would open…mine? mine?  Nope.  Finally 5:15 came (surgery was supposed to be an hour) and Dr. Conlin came through the door.  I was like ‘yeah I can go back now’…but no…she was looking to see me and it wasn’t to take me back to Ken.  She told me Ken had done awesome, reacted well to the anesthetic and was in recovery.  It took longer cauterize the incision because of the platelet count/clotting factor. 

THEN SHE SAID THAT WORD.  "It’s CARCINOMA".  I’m like Woah…what happened to 7-10days to tell me…I’m not ready for this yet!  She gave me a rundown of what to expect in the next few days / weeks.  I comprehended most but it sounded more like the teacher in the “Charlie Brown” comics ‘Wah Wah Wah Waaah’.  She gave me a big hug and I remember worrying that I was stabbing her with my poppy?!

I updated the rest waiting with me in the hallway and made the long walk back to my chair past the other people waiting.  Luckily my back was to them.  Little by little it started sinking in.  ‘Don’t cry…you won’t be able to stop plus have to be strong for everybody else right?!’  I tried texting a few people but it was too blurry through the mist.  The words seemed so cold via text.  Or did they bring it closer to reality?  I wasn’t ready to use ‘that word’.  Amy was on her way up because my ‘I’m fine but the poker face is getting harder’ comment didn’t work with her J.  And then that damn door opened again…but this time I heard ‘that laugh’…and I’m like oh yes…that’s mine!  And there was Ken…looking quite fabulous and his normal chatty self. 

He had to stay overnight because it was late and they wanted to watch for any bleeding.  My girls and I raced (via the stairs thank you Sarah! hehe) to catch up with him.  We were sent to a waiting room until the nurses did their checks on him.  Ken’s Mom was there now too.  Finally, I was allowed in.  In true Kenny fashion he was getting the nurse to order cable and asking for my credit card!  He was enjoying the liquid dinner they gave him (no ‘cab sav’!).  He then says, ‘well that’s round 1 over’.  I thought OMG you don’t know.  How do I do this?  So we had our moment while I filled him in.  The others had their visits and left.  Amy stayed with me until the nurse kicked us out at 9:30pm.  She stayed at our house that night (thank you).  Went to bed hoping to fuzz out the day flipping channels but the stupid cable was out so my ipod had to do.  What a long night.  I missed my ‘pillow’ L

Back 1^st thing the next morning to bring Ken home.  Dr. Conlin was in with him already.  They needed a few days for the lab results to see how fast the tumour cells were growing.  That will tell them how to proceed.  She was going to refer him to a colleague in London who specializes in robotics.  We would also have a team of other doctors, dieticians, social workers etc.  She wouldn’t give us his name until the referral was accepted.  But I was OK…I love google and I’d find out!  Ken’s first request was an egg mcmuffin but wasn’t allowed toast yet.  So off to the grocery store for some yummy goodies.   It was so nice to be home – together.  But how to jump back into the real world that had suddenly changed since we left it last?!  And that’s what we did because that’s who we are!

Next post – HOW WE MET 'THE ROBOT KID' (11/14/11) and we had hopes of surgery!

xx

S

How we got here

Monday - 10/31/11 –  1^st day back to work after returning from a wonderful trip to Jamaica for my daughter Amy’s wedding.  Thought it would be normal day of catching up and putting out fires.   Booked Ken a Dr.’s appointment for 5pm because he had been having a sore throat for a few weeks.  A few weeks earlier he had what we thought were nose bleeds first thing in the morning.  Passed it off to the season changing and dry air.   Second last day in Jamaica he wasn’t feeling well and then spit up quite a bit of blood in the sink…more than the normal nose bleed. 

At the Doctor visit, he noticed an open sore in the back right of Ken’s mouth.  We were given an antibiotic and a referral to Dr. Conlin the local ear, nose throat specialist.  Ken showed Matthew and I his mouth when we got home.  Not a pleasant site or feeling is about all I can say. 

It was Halloween night and we missed our usual excitement of watching the little goblins come to our door.  Ken greeted the remaining goblins after we got home.  Me…I had trouble putting the happy face on to go to the door.

Wednesday - 11/2/11 – Met with Dr. Conlin.  She’s new in town.  Very nice.  She introduced Ken to his new friend Mr. Endoscope.  Nice long snaking black tube with a light and camera on the end.  So up the nose and down the throat she goes checking things out.  Ken’s face was all scrunchy kind of like when the dentist is digging at your teeth.  Pretty much right away she said she would need to do a biopsy to see what we were up against.  At first she thought they may take the tonsil out too but needed to see  CT scan results.  I mentioned to her that it had increased in size and appearance since I first saw it.  That’s when I heard the ‘tumour’ word based on what she saw.  Then things started spinning a little faster.  She was juggling her schedule to get Ken’s biopsy done on the following Monday.  Off we went to get blood work right after that.  Then…boom…had another work appointment and had to put the game face on.  But the whole time my mind was trying to comprehend what we had just been told.  I took a picture of “Teddy” so we could watch what he was up to in the coming days.

Thursday – 11/3/11 – Had to go to the hospital for 9am pre-admit clinic for surgery.  Do’s and don’t before surgery; what to expect; what to bring.  They were scrambling to clear a spot for a CT scan either later in the day or Friday.  Lab from yesterday didn’t take tests for everything on the requisition so off we went to the hospital lab to get more tests.  Oh ya, and Ken hates needles and hospitals…so not quite impressed.  Also had to meet with Dr. Mota the anesthesiologist because of the location of the tumour they weren’t sure how they would insert the breathing tube when they put him to sleep.  And out comes Mr. Endocope for another trip.  Ken’s eyes got really big because it was bigger than the one yesterday.  So Dr. Mota went and got the ‘kiddie’ version.  He liked what he saw and noted that the vocal cords were OK and the tumour wouldn’t be in the way.  The other option would have been to do the breathing tube up his nose and then it would only be a ‘local’ and Ken would be semi aware of what was going on.  Again…Ken not impressed.

Friday – 11/4/11 – Back to the hospital for the CT scan.  We were very impressed with the new section of the hospital it was in.  Our great RE/MAX & community donations going to a good cause.  And this is where Ken had to step out on his own because of course I wasn’t allowed to go in for this appointment.  I was like Momma Lion pacing waiting for her baby to return.  To pass the time and keep my mind sane I started writing a children’s book version of Kenny’s Big Adventure with Teddy the Tonsil Tumour complete with my bad attempt of drawings of the evil Teddy and Kenny the superhero (complete with abs J).  My girls are arguing over who gets the first signed copy!  Oh yes, got some motivational advice from little brother Trevor… “Just tell him to remember Seaforth" … I feel another Kenny story is about to be heard J.  During the CT scan, they inserted dye through an intravenous needle.  They also spun him around and did a scan for his chest.  Then back to Dr. Conlin to discuss the results.  We were impressed that less than an hour later she had what she needed.  She liked that the tumour was uniform and in one location.  The chest scan was fine.  Apparently, there are lots of other cavities in your head where it can go but hadn’t.   Surgery was set for Monday 11/7/11 at 2pm.

So that is the quick version of how we got to my first blog posts. 

The long version includes many texts, BBM’s, emails, visits & calls within our initial support group.  To each of you I thank you from the bottom of our hearts.  You were the knot at the end of the rope I didn’t know if I could hold on to.  I knew you were hanging on for me many times!  Xoxo S

There are also many more stories along the way in this very short whirlwind of a week.  I’ll post them as separate entries because they deserve their own moments.

Next post - SURGERY DAY (11/7/11) – and how we came to hear ‘that word’.  And off we went on the next part of the journey.