A Month of Blessings

Sorry for my long absence.  I have been in my world of denial.  This has been a hard month for the whole family but I think we are all doing better now.  Everything just seemed to hit at once and we were all feeling tired and worn out.  I have been healthy since Joel was diagnosed almost a year ago but at the beginning of the month my body decided to give out on me.  I guess it has just been too much physically, mentally and emotionally.

So there I was, sick and tired with my brain in a huge fog.  I kept forgetting everything that I was supposed to do.  In the kitchen, I made two nice big stovetop fires; it was not a pretty picture.  And that is when the Church care groups decided to bring us a hot meal every week for the next few weeks.  We have had two amazing meals so far and there was so much food that we had another meal just of leftovers.  Joel and I are leaving for Vancouver tomorrow and for the next three Wednesdays, Grant and the kids will get a nice hot supper.  We really have the most amazing Church family.

This month….

Adam turned 12 and had a great day with all his friends.

 Grant trimmed all the trees.  I told him "less is more"  as in, the less you take off…. the more effective it is.  He understood it as, the least you leave on the tree… the better.  Anyway, he tells me it will look great in the spring.  We will see…..

 Adam built and launched his rocket.  The first time it went off without a hitch, the parachute opened and the top half landed on the roof of the pole barn.  The second time the parachuted didn't open and it landed about 2 feet from Grant's truck!!!! Time to build a new rocket, and next time it gets launched WAY out in the field. 

 Brianna was very happy to have Shane home for a weekend.  She is due on the 22nd.  I told her she can have the baby tonight or else she has to wait until Joel and I get home in December.

 Joel has been doing as expected.  His hair all started falling out this week and Brianna buzzed all his hair. The dex affected him as we expected, he was irritable and emotional but he didn’t complain.  His appetite went way up.  He would eat breakfast and then have a box of mac and cheese, a snack before lunch, lunch and then another box of mac and cheese.  Supper was much the same and then he would eat more pasta before bed.  Coming off it was hard.  The side effects were insomnia; vivid dreams when he could fall asleep, lots of pain and trouble walking.  The x-rays showed large white areas in his bones but no one really knows what they are or if they are normal at this point in treatment.  He is not allowed to take Tylenol or Aspirin because they mask a fever.  The codeine doesn’t seem to help at all with the pain and he doesn’t like taking the morphine because of the side effects and hallucinations he would have all night.  So I almost burst into tears when I ran into Deanna at the Shuswap Health Food store and she told me about Curamin (from tumeric).  Joel took two pills that night and slept a solid 9 hours.  She also lent me an amazing book to read by a doctor who practices in Victoria and gave me a list of options to Google.

Joel was given a truck on one of his hardest days.

Jim, I don’t know how to thank you.  You made Joel’s face light up and you took his mind off everything he was going thru.  He could barely walk up the stairs and couldn’t drive that day because the pain in his hip was so bad but that didn’t matter.  He was so weak that he couldn’t even open the door to the truck by himself but that didn’t matter either, he still wanted to get up and just go sit in the drivers seat and make plans for when he was feeling better. 

 The people where Grant works also had a raffle and gave a very generous gift.  So glad you won Brandi!

 I got the baby's quilt done.  So you it can arrive any time….. hint, hint.  No pressure Brianna. 

Anyway, I just wanted to say a big thank you to everyone.  Thru all of this each one of you has been a constant support.  We have never felt alone.  We have felt so many people sharing in Joel’s battle and cheering him on.  It has not gone unnoticed.  And thru our darkest days we have also never felt so blessed and supported.  Thank you for your prayers.  We have the best family, friends, neighbors and Church family that anyone could ever ask for.

So the plan for this week is….. Monday, Joel goes for blood work and we head down to Vancouver.  If the counts are good he will start chemo on Tuesday.  Radiation starts on Wednesday.

31 days to go until Joel is in Maintenance, I think December 21 is the big day!!!!

Delayed Intensification II

Interm Maintenance II is finished!  Joel was supposed to have five increasing doses of methotrexate every 10 days but his counts dropped and never really recovered so he ended up just having it increased once and the rest of the doses stayed the same.  He was quite sick thru most of the treatment, he stopped eating for awhile and lost a bit of weight.  He also lost his sense of taste and smell but that has just started coming back.  He was delayed twice during the last set of treatment.  His last two weeks at home were great though and he said that he was feeling better than he has felt in the past year.
Blood counts yesterday were all good, actually they were on the low side of NORMAL!
Hemoglobin - 116
Platelets - 318
White cells - 3.1
ANC - 1.69
Joel started Delayed Intensification II today at 10:00 am.  He began the day with spinal methotrexate, then he got vincristine and doxorubicin thru his port, and he started on the steroid dexamethasone.  Joel doesn't like the feeling of the medication or of being put to sleep so he choses to have the spinals done while awake and alert.  In a couple of days he will get another dose of PEG-Asparaginase and then he can come home again.  He will hopefully be home for about 25 days and he will be having his chemo done in Vernon during that time.   Delayed Intensification II is pretty much just like the first Delayed Intensification except that during the second half he will also have radiation and he won't get the other steroid (thioguanine).
The dexamethasone makes Joel feel very irritable so we all have to be careful not to annoy him over the next few weeks.  He is on it for one week and then he gets a week off before starting it again.  The book says that doing it this way (discontinuous dexamethasone) is not considered "experimental" since it has been used in many past studies; it is being given in this way for subject safety reasons.  I am not reassured when I read things like that, it tends to have the opposite effect on me.   Coming off it is very painful as the dex seems to attack the bones, joints and any previous injury sites but I am prepared with a freezer full of ice packs, bags of frozen peas and calcium supplements.
And Joel will lose his hair again, just when it was growing in so nicely, but this should be the last time.
Just 57 more days until Maintenance.

Why my husband calls me hun.

Okay, first I will show you a few pictures.  And then I will tell you what is going on with Joel's treatment.  And last of all I will share a story about Grant's pet name for me.  Just a warning…. you will need kleenex.

My baby girl is trying to turn me into an Oma in about a month.  

Ari had a fortune cookie tonight.  He really hoped it would say that "a tall beautiful blond woman would change his life".   He was disappointed when it said that "you have all the assistance and luck this month to succeed".  I don't understand my boy.

So about Joel, he was supposed to start treatment again on Wednesday but when he went for blood-work on Tuesday, the results showed that his counts had drastically dropped.  We were kind of shocked cause they had been so high the week before and he has been feeling really good.  They will do more blood-work on Monday and maybe he will be able to start treatment again on Tuesday.  So we are now paused at 57 more days until he is in Maintenance.  We are still hopeful that he will be finished before Christmas.  I am thankful for an extra week to fatten him up.  He has a new favourite food…. chips and dip.  The chemo depletes his body of everything good, especially calcium so he gets some wicked charlie horses.  Last week he had them in both legs at the same time, the one only lasted about a minute but in the left leg it lasted about half an hour.  I give him calcium supplements daily but after last week I doubled the dose. I am currently reading the book "Childhood Cancer Survivors" because I want to be aware of what Joel needs to look out for when this is all done.  It says that often the kid's bones are like swiss cheese after treatment and they need to take extra care not to break them.
Joel is out at a birthday party with friends tonight.  He is feeling normal and is a happy boy.


And now for my sappy story (don't forget the kleenex, grab a whole box just to be on the safe side).

I have memories of my dad calling my mom "honey".  I had an uncle and aunt who called each other "sugar" and "darling".  We lived right beside them while I was very young and we heard those terms of endearment used regularly.  My brother and his wife call each other "babe" and it is just so very adorable.  My sister and her husband always called each other "sweetheart".  I think they still do after many many years of marriage…… I will have to ask her about that later.
So, last week while we were all sitting down to a nice dinner, Grant said "hun, could you pass the salad dressing".  The youngest in the house (just 5 years old) asked the question that none of us has ever thought to ask before.  She said, "Papa, why do you call mama hun"?  He did not say something cliché like "it is because she is so sweet" or something silly like "it is because she is so sticky and attracts all the bees".  But instead, without missing a beat he answered her…. word for word….. I am so not kidding you…… He said, " It is because she is related to Attila"
Needless to say, there have been no more pet words or terms of endearment used this past week.  I wonder if he will dare call me "hun" ever again.

Laughter, the best medicine

I sit down at my computer everyday and I have good intentions about leaving an update but most of the time I just end up walking away.  Maybe sitting down here and writing forces me out of my happy little world of denial.  I also find that it is much easier for me to write when I am alone.  And today I find myself at home with only two kids (instead of the usual 5 or 6) and it is as alone as I will ever be.  The dishes are all done, laundry is caught up and I don't feel like doing all the clean the house chores right now, so I will write.

I looked at my camera today and found it empty, no pictures.  That is not like me but I will take pictures soon and post them next week.  Today I will just write a bit about what has been going on the last few weeks.

Joel and I went to Kelowna on October 3rd for the methotrexate and vincristine.  Joel did not want to go because he was finally feeling normal again so he was a bit grumpy.  It was my first time taking him to Kelowna for treatment, he and Grant had been several times before.  It was a good thing that Joel knew where he was going cause I would have gotten so very lost.  The treatment room he was put into was very pick and it had a strange circus painted all over the walls and ceiling.  We had to wait for a long time for blood work results and then for the chemo to be sent up.  The methotrexate is supposed to take between 15 minute to half an hour to drip into the system.  Then the line should be flushed for a few minutes in order to clear and then the vincristine is given.  After the nurse started the chemo she realized that she didn't have a clamp on the IV so the methotrexate ran into his port in less than 5 minutes.  Joel turned green and then grey and I ran to get him some ice to chew on.  I think the nurse was a little shocked at how quickly Joel reacted.  She flushed his port with a small syringe and then immediately started the vincristine.  It is very handy having chemo done in Kelowna and getting to go home the same day. But I have so much more security and peace of mind when it is done in Vancouver where that is all they do all day and there seems to be less little mistakes made.
Joel got home and went straight to the couch and that is were he lived for the next week.  He has started not eating at all after chemo.  That is a pattern I have seen in so many of the kids going thru this.  They would rather not eat anything and not throw up.   I feel lucky if I can get a small bowl of soup into him in a day.   The dietitian is always after him to at least drink boost, which he can't stand.  She wants me to add cream to all his food, give him whole milk to drink, feed him high fat yogurt and ice cream.  Just the mention of these foods tends to turn him green.
I am not the kind of person who has the television on all day.  I love peace and quiet and would rather have the kids reading, building things or playing outside than sit in front of a screen.  But having something light to watch really takes Joel to another place and lets him forget how he is feeling.  Seeing Joel on the couch, curled up in a ball, with his head on the cushion always breaks my heart.  So I find myself looking for distractions for him that are still age appropriate for everyone else in the house.  I think the boys can all quote every episode of "Corner Gas" and "Mythbusters" is always good for a laugh cause boys just seem to love seeing thing get blown up.  Lately they have been watching the old "Dukes of Hazzard".  Car chases, pretty girls, police sirens and cars flying thru the air…. they really don't think it gets any better.  Personally though, I think that if you've seen one episode, you've seen them all.
I also find that books distract Joel.  He just finished reading "Watership Down" and I also gave him my old copy of "The Sacred Diary of Adrian Plass" which made him howl.
Anyway between the books and tv, he made it thru the week without losing too much weight.  I made lots of pie in order to tempt him.  Once he agrees to eat pie for breakfast, then I know he is on the mend.  Grant and I are both trying lose some weight, actually we are having a contest to see who can lose the weight first.  We are NOT competitive in the least.  He gets very mad at me for doing so much baking cause he thinks I am trying to sabotage him but I am just trying to fatten Joel up.  So then Grant goes out and buys me ice cream bars and chocolate bars which I eat just because they are there.  Sometimes I think it is a win/win situation but really it is a vicious cycle…. but I have a plan.  I will eat all the ice cream bars but leave the boxes in the freezer so that Grant thinks I still have a big stash and then maybe he will stop buying them.  And then I will make lots of fattening food for Joel…..

I totally lucked out with the whole son-in-law thing.  Shane made most of our Thanksgiving dinner including the bird.  He cooked it in beer, which I have never heard of and it was moist and tender.  Ari and Adam were most excited to be eating beer.  Really?  It was all too tempting for Joel who tried eating and the results weren't pretty.  But it was nice to see him be tempted and to try.
I felt my grand-baby have the hiccups and I felt it kick!
After Thanksgiving Joel started feeling a bit better everyday.  He is going to be the best man at Brayden and Brooks wedding next summer!  Thanks Brayden for giving Joel something to look forward to.
I started on all our passport paperwork and we had our photos done.  Joel asked to go to Israel for his Make a Wish.
Joel registered for college this week and will be taking calculus thru distance ed.
Thursdays blood work results were all good.
White cells - 3.1
ANC - 1.6
Hemoglobin - 116
Platelets - 318
Joel will have blood work done again on Tuesday and head back to Vancouver as long as the counts are still good.  I will write about the next set of treatment then.
Ari got onto my library website and ordered every Garfield, Asterix and Lucky Luke book ever written.  I think there were 34 in transit this week.  That was hardly embarrassing, going in to the library and picking them all up.  And that is not even half of what is coming.  Note to self….. get a new library password!
I have not been running, my ankle is still bothering me.  I miss running with all my heart.  Instead I have been splitting wood.  It is a good workout that makes every muscle in my body ache, even the muscles in my toes that I didn't know I possessed. I have also been riding the bike.  I usually go out in the evening, just around dusk when all the kids are settled and my work for the day is done.  But that is when the insects all seem to hover a few feet above the pavement in order to absorb the last fading heat of the day.  And I seem to swallow and ingest a huge amount.   Note to self…. find a different time of day to ride your bike!

My questions for the week?
1. Your ideas for funny books to stock up on for Joel
2. Funny movies or tv shows for Joel
3. Are bugs considered a protein or carbohydrate?  Just so I know my proper calorie intake after a bike ride.

And I will go clean the house now.

Eighteen

Joel had a birthday yesterday.  He is now officially an adult and he tells us every chance he gets.

He just wanted a quiet birthday with just family around.  He asked for a black forest birthday cake. Grandma and Jerry stopped by on their way back from Dawson Creek.  

He was very patient and waited till Ari got home from club to open his presents.

I think Joel's favourite gift was the violin.  He has been crushing on it for a long time.

Now, to find a teacher to give him lessons. 

But the absolute best gift was a black mullet wig from Brianna.

All the kids channelled their inner rock star personalities. 

I think we will be starting up a family punk band in the near future.

So, next is more blood work tomorrow morning.  If the counts are all good then Joel will get chemo in Kelowna on Monday morning.  Joel has been doing better this time around.  He is still not eating much but he hasn't been throwing up as much either.  Meat and dairy really upset his stomach so I am trying to cook more vegan meals.  I made him a spicy barley and mushroom soup which he said was the first thing in a very long time that he actually wanted to eat.  Yay!

77 more days until Joel is in maintenance (as long as there are no more delays)

just like riding a bike

I ran this morning and it hurt.  Two weeks ago I did my best run ever, 7k in 41 minutes.  But then my left achilles tendon started to bother me and I had to slow it down.  My goal is to be able to run at least 10k and I would like to be able to do a kilometre every 6 minutes.
My brilliant cousin told me that I should stop running and try biking.  The trouble with that is it had been at least 20 years since I have been on a bike.  I told him that I would be wobbly and he said just to go really fast and then I wouldn't wobble.  So I tried it and it was mostly like he said.  As long as I went really fast, I was fine.  I only crashed into Grant once when I was trying to shift gears halfway up a hill.  I think I did pretty good, I rode all the way to Enderby and back and only crashed that one time.

I started running shortly after my 40th birthday.  It was something I had thought about for a while so I asked for an ipod for my birthday and around the middle of April I asked my tech-man (Joel) to download Couch to 5k for me.  The first day was only 6 actual minutes of running and I thought I was going to die.  During the first few weeks of running Grant would tease me and walk beside me while I ran (I kid you not, I was that pathetic).  I realized that I hold my breath when I try to do anything that does not come naturally to me.  It is really hard to run while you are holding your breath and so I have had to learn how to breath.
Whenever I try something new I tend to obsess about it.  I read the books "Born to Run" and the Runner's World "Complete Book of Running".  I watched a documentary about Terry Fox and then watched the movies "Chariot's of Fire" and "Rocky".  I even had Joel download the theme songs from those movies to put on my running playlist (yes I am that much of a geek but those songs really do make me run faster).
I really hate running.  It feels like I am doing penance. It does not come naturally to my knock-knee'd, pigeon-toed, lopsided and gangly body.  For the first half of my run I wonder what I am doing but then the pain seems to disappear and I become delusional.  I start to think I am graceful and swanlike.  But in reality I am afraid that I must look more like a red steam engine puffing along.   Not to mention that running has made me gain weight…… and no, it is not the ice cream bars that I just can't seem to stop eating, it IS the running.
I like getting up early, just as it is beginning to get light out and while all the kids are still sleeping and I head out for my run while there is little or no traffic.  Right now I run for between 40 and 50 minutes and  often I get home just as the sun is coming up over the mountain.  I do love how I feel after running though but like I said before, by that point I am delusional.

Joel is back in Vancouver again.  He and Grant left yesterday.  We didn't think his counts were going to be high enough just because of how he was feeling but the white count was at 1.7, hemoglobin was at 105, platelets were 114 and the ANC was .63.  The ANC was high enough to begin treatment again but low enough so that the methotrexate amount will not be increased.
Usually Joel is feeling better and has more energy a few days before starting treatment.  But this time he was still nauseous, throwing up and he spent most of the day laying around on the couch.  He started throwing up blood again and the open sore on his lip still hadn't healed.
Today he started the day by having an ECG (it is a preventative measure in preparation for the doxo that he starts next month), then he got his vincristine and methotrexate thru the port.  Tomorrow morning he gets the spinal chemo and then he should be able to head home.
Yesterday after having his blood work done, Joel stopped at the college to talk to one of the counsellors. He is thinking of becoming a teacher.  Registration for courses starts again in November and I think he can do most of his classes thru distance education.
We have all been feeling worn out and tired this month.  It has been over nine months of this and I think it is starting to catch up with us.  But we do have an end date in sight for this intensive treatment.  If there are no more delays then the last day before the three years of maintenance will be December 12th.  There are still two or three places where Joel could be delayed but it still feels good to have an approximate end date to look forward to.

Anyway, here are some pictures of what we have been up to lately.  Today Adam, Ari and I walked about an hour down the railway tracks to go check out the beaver dam that is causing our back field to flood.  The railroad is currently working on getting a permit to remove the dam.  It is over 6 feet high now and they are only allowed to remove 6 inches at a time.  The man we spoke with said it would take him over a week to remove this dam.  Hopefully they will relocate the beaver this time too. 

There was lots of bear scat along the tracks.  The boys saw something run across the tracks, they said it was either 2 beavers or 2 little bears.  Not sure if they were just trying to scare me…..?

Grant is now too old for us to count.

 This is my serious "don't mess with my ice cream bars" face.

 Brianna came home and played racing with the boys.  It felt just like old times.

Anyway, I just have a few questions before I go.
1.  Is running supposed to feel like penance?
2.  What music makes you want to run? (I need all the help I can get)

Thursday

Thursday Joel had blood work done at 9:00 am.  It showed that his platelet count had dropped and was too low for getting chemo that day.  He was told that he would have to stay in Vancouver and have blood work done again Monday morning.  He will get vincristine no matter what on Monday, if his platelet counts have come up then he will also get the methotrexate.  Then he will get the peg-aspariginase on Tuesday and head home.
He had a CT scan at 10:00 am and a check up with Dr. Dix.  David said that the scan shows that the clot is breaking down and there is now very good blood flow thru it.
At 1:00 pm he had more blood work done to check the level of blood thinner.
At 2:00 pm we met with the radiologist who gave us much more information than I can remember.  She did promise to write it all out and give us a copy next week.  So I will write more information about that when I have her notes in front of me.  I think Joel was a little shocked by what she said.  He was hoping that when this was all said and done that he could just move on with his life and forget about it all.  But the fact is that he will have to be checked and monitored every few years for the rest of his life.  I guess I will just keep reading and researching.
Grant and Joel spent the day at Kits beach on Friday, on Saturday they were given tickets to the BC Lions game.  Today they are hanging out on the beach at Stanley Park.
Today is Grants Birthday and he is 45.  Five whole years older than me……. I remind him of that as often as possible.  He thought no one would find out but a little birdie told Connie and she organized cake, presents and made sure everyone in the house knew.  I don't think he will ever forgive me…..