#4 is Done

I'm so glad this one is done... this time was tough.

First, the easy stuff....
I had a port-a-cath put in on Friday. This is a central access line that will allow them to give me chemo through this spot without putting in new IVs all the time. My veins are pretty much shot. They were in rough shape from my previous chemotherapy 22 years ago and haven't really recovered. This past chemo I only needed two IVs - and I had a good nurse so no extra pokes. But the time before I needed 3 IVS and two tries. The IVs are good for a bit, but then deterioriate, and because the one drug I take is quite dangerous to tissue, they need an entirely clear line. I'm looking forward to not being so much of a pin cushion.

I got back from chemo on Friday afternoon. And as I said, it was a rough one this time - physically, mentally and emotionally. I'm not sure why that is but the nausea was tough this time and then that leads to a tougher time mentally as well. I'm wondering if a big part of it was my frame of mind going in. I had a few worries on my mind and a few things were different:
- my non-verbal 5 year old and his new babysitter alone together for an entire day. I knew she'd take good care of him and he does communicate quite well without words, but still... she doesn't know his routines, his likes/dislikes etc etc etc etc (But, of course, they ended up getting along wonderfully and both boys are apparently in love with Kathy)
- the yet unknown results of my CT scan
- ending up going to chemo by myself (now before all my local friends remind me that I should have called them, it was just easier at the time and in the circumstances that I drive myself). I missed having Tom's presence by my side.

Looking back, it really is a short time that I'm feeling so terrible... just over two days... not a huge stretch of time. And even now, a few days later, it really doesn't seem that bad (somehow this seems reminiscent of all those stories about giving birth and how you don't remember the pain afterwards!) But when you're in the middle of it, time seems to go slower. I couldn't eat or drink. I couldn't even bear to have the food tray brought into my room this time as every smell was horrible. Sitting up was too much work. I just couldn't imagine how I am going to get through another one. I couldn't even manage to pray. All I do is say "Lord, carry me right now because I can't do it" and then just "Carry me Lord". I have a little 3 word "prayer" or mantra I say in my head and it helps me to relax... and then I sleep. Wonderful, restorative sleep. Unfortunately, for me, I couldn't sleep 48 hours in a stretch and had to wake up at some point.

I'm not telling all of this to have people feel sorry for me. That's not what I want. I hesitated about posting this as I don't want people to feel sorry for me... I've written, deleted, rewritten, deleted again.... but ultimately what I'm writing is my experience and I wanted to share it. And I think there are a few reasons for this:

1. That you'll keep me in your prayers that I can rebound quickly and that the next round is easier. Pray that, to paraphrase from the poem below, the Lord will help me to persevere through all these days, knowing that this chemo is making me better and it is working towards the end that I'll be free from this dreadful "C""

2. To let you know that I do have my not-so-good days. I've been told many times how "strong" I am. And I think I am. I'm optimistic, hopeful and am enjoying life even in the midst of this crap (yeah, I know... I could have picked a better word, but you know what - it IS crap!). And those not-so-good days are when I desparately need your prayers for strength and peace.

3. To share my faith... How I'm learning that God is my strength and support. When I can do nothing but pray "help", He is there for me, enfolding me in love. "Be still and know that I am God".

Here's another poem by Angelina Fast-Vlaar that is so appropriate for me at this time:

Black Thursday
Days of feeling well
enjoying life and all its joys
are abruptly ended by the coming of Thursday
A few pills, a needle pulsing
poison through my veins
are enough to collapse the wellness
and I am catapulted into a world
where the air smells foul,
where the water reeks,
where food and drink take on
a strange metallic taste,
where my stomach revolts,
my mouth breaks out,
and my muscles turn to lead.
I curl up by the fire on the soft sheepskin rug.
How sick can I get? Will I bounce back before next Thursday
already looming black on the horizon?
The glowing fire warms my shivering frame and I remember reading,
"May the Lord direct your hearts into God's love and Christ's perseverance."
As my body relaxes in the fire's warmth, I let my heart relax in the warmth
of God's love and I muse how Christ's long dark Friday turned to "Good" because
He persevered to work a great salvation. But how can I persevere through a
whole year of Thursdays coiled before me like an ever-circling, menacing maze?
And so I cry,
O Lord, direct my heart that I may learn to persevere through all the "good"
Thursdays, and may they work towards the end that I'll be free from this
dreadful "C". DV

Pilates Anyone?

One morning I set Ryan up in front of Sesame Street at 6:00 am (yes, he wakes up far too early for me) while I went to take a shower. I came back to Ryan doing his Winsor Pilates exercises. It was too funny for words. What got me is that he got out the exercise mat and was diligently following the instructions. He could do the 100 better than me! I quick took a couple of pictures before he saw me. A week or so later, he did it again... so this time I got the video out! Click on the link below to see the videos. The second video is actually Kurtis getting in the action too. It also shows Ryan's slowly developing speech! For those of you who don't know Ryan, his speech has been his biggest challenge. He is diagnosed with apraxia - this is unrelated to Down syndrome, although many children with DS do have apraxia. Apraxia basically means that his brain knows what it wants to say, but he has extreme difficulty in making his mouth form the correct shape to say the words. It also means he can say a sound in one context but not another. For example, he can say "no" perfectly clearly, but cannot make the /n/ sound on command. Anyways, we are slowly seeing some progress and it is so exciting. Here is Ryan saying "I love you"... and the neat thing is that the pronounciation has improved a great deal since this video was taken.



































http://dropshots.com/annettel

Yeah - we have a babysitter!

I have been worried about what we're going "to do" with the boys over the summer. I'm not able to take care of them every day... day in-day out... Right now, a few hours at a time is about all I'm physically able to handle. Tom's Mom is around too, but it's really not fair to her to ask her to take care of them more than once a week either. I emailed a few friends a couple of months ago asking if they knew of any teenagers who were available for babysitting/mother's helper work. I prayed that the right person would be found. Well, our prayer was answered... we have Kathy!

She's the daugher of a friend of a friend...and the only person that was brought to my attention. I must admit, though, that once I heard about her, I stopped actively looking as I thought she would be perfect for the job. And she seems to be! She's worked with a lot of children, including a child with Down syndrome and a child with autism. She's also working on her ECE (early childhood education) diploma so she has lots of ideas of things to do with the kids. She's done volunteer work at the Camp that Kurtis and Ryan are going to for one week (Sunrise Therapeutic Riding Centre - it's geared to children with special needs, but their camps accept children of all abilities and needs) so she'll be able to easily be his one-on-one for that Camp! Best of all, with her experience, she'll be able to help me continue to work with Ryan towards his goals so that he'll be well prepared for kindergarten in the fall.

We met with her tonight and she's hired! I think it'll be a good fit.

Happy (belated) Mother's Day

I hope all you mothers reading this had a wonderful day...you deserve it! And a special wish to my Mom.... we didn't make it down to visit this weekend, but you know I love you and I hope you had a good day with your other #1 daughter!

First, I got treated to some beautiful gifts made with love by my boys. Then I got treated to breakfast made by all my boys. Tom gave me a beautiful lamp (Lampe Berger) that is supposed to clean the air of bacteria as well as scenting the room. (It's a case of "great minds think alike"... I had heard about these lamps from my massage therapist and was planning on investigating further, but surprise, surprise, Tom heard about them from someone too and bought me one!). Anways, back to our day....We went to Wings of Paradise in Cambridge. We've been there many times before, but the kids (particularly Kurtis) still love to go. He finds the butterflies and the bugs they have on display fascinating.

Thank you Tom, Kurtis and Ryan for making my day!






















I don't remember where I saw the following article, but I kept it because it really reminded me about what's important in being a parent, and for some reason, found it again today. Enjoy.

On Being Mom
by Anna Quindlen

If not for the photographs, I might have a hard time believing they ever existed. The pensive infant with the swipe of dark bangs and the black button eyes of a Raggedy Andy doll. The placid baby with the yellow ringlets and the high piping voice. The sturdy toddler with the lower lip that curled into an apostrophe above her chin. ALL MY BABIES are gone now. I say this not in sorrow but in disbelief. I take great satisfaction in what I have today: Three almost-adults, two taller than I am, one closing in fast; three people who read the same books I do and have learned not to be afraid of disagreeing with me in their opinion of them; who sometimes tell vulgar jokes that make me laugh until I choke and cry; who need razor blades and shower gel and privacy; who want to keep their doors closed more than I like; who, miraculously, go to the bathroom, zip up their jackets and move food from plate to mouth all by themselves. Like the trick soap I bought for the bathroom with a rubber ducky at its center, the baby is buried deep within each, barely discernible except through the unreliable haze of the past. Everything in all the books I once pored over is finished for me now. Penelope Leach, T. Berry Brazelton, Dr. Spock. The ones on sibling rivalry and sleeping through the night and early-childhood education, all grown obsolete. Along with Goodnight Moon and Where the Wild Things Are, they are battered, spotted, well used. But I suspect that if you flipped the pages, dust would rise like memories. What those books taught me, finally, and what the women on the playground taught me, and the well-meaning relations --what they taught me was that they couldn't really teach me very much at all. Raising children is presented at first as a true-false test, then becomes multiple choice, until finally, far along, you realize that it is an endless essay. No one knows anything. One child responds well to positive reinforcement, another can be managed only with a stern voice and a timeout. One boy is toilet trained at 3, his brother at 2. When my first child was born, parents were told to put baby to bed on his belly so that he would not choke on his own spit-up. By the time my last arrived, babies were put down on their backs because of research on sudden infant death syndrome. To a new parent this ever-shifting certainty is terrifying, and then soothing. Eventually you must learn to trust yourself. Eventually the research will follow. I remember 15 years ago poring over one of Dr. Brazelton's wonderful books on child development in which he describes three different sorts of infants: average, quiet, and active. I was looking for a sub-quiet codicil for an 18-month-old who did not walk. Was there something wrong with his fat little legs? Was there something wrong with his tiny little mind? Was he developmentally delayed, physically challenged? Was I insane? Last year he went to China. Next year he goes to college. He can talk just fine. He can walk, too. Every part of raising children is humbling, too. Believe me, mistakes were made. They have all been enshrined in the Remember-When-Mom-Did Hall of Fame. The outbursts, the temper tantrums, the bad language, mine, not theirs. The times the baby fell off the bed. The times I arrived late for preschool pickup. The nightmare sleepover. The horrible summer camp. The day when the youngest came barreling out of the classroom with a 98 on her geography test, and I responded, "What did you get wrong?" (She insisted I include that.) The time I ordered food at the McDonald's drive-through speaker and then drove away without picking it up from the window. (They all insisted I include that.) I did not allow them to watch the Simpsons for the first two seasons. What was I thinking? But the biggest mistake I made is the one that most of us make while doing this. I did not live in the moment enough. This is particularly clear now that the moment is gone, captured only in photographs. There is one picture of the three of them sitting in the grass on a quilt in the shadow of the swing set on a summer day, ages 6, 4 and 1. And I wish I could remember what we ate, and what we talked about, and how they sounded, and how they looked when they slept that night. I wish I had not been in such a hurry to get on to the next thing: dinner, bath, book, bed. I wish I had treasured the doing a little more and the getting it done a little less.Even today I'm not sure what worked and what didn't, what was me and what was simply life. When they were very small, I suppose I thought someday they would become who they were because of what I'd done. Now I suspect they simply grew into their true selves because they demanded in a thousand ways that I back off and let them be. The books said to be relaxed and I was often tense, matter-of-fact and I was sometimes over the top. And look how it all turned out. I wound up with the three people I like best in the world, who have done more than anyone to excavate my essential humanity. That's what the books never told me. I was bound and determined to learn from the experts. It just took me a while to figure out who the experts were.

Our Great House

"Mom, we have a great house for nature" declared Kurtis yesterday. Considering we live in "town", we almost have our own zoo!

First, we went to check out "our" bunny. He makes his home in our front garden, nestled in behind the bushes. He's quite a tame bunny - although he won't let us get right up to touch him, he does let us get quite close and will sometimes just stay on the front lawn while the kids play nearby. He has a little bunny friend who sometimes comes out and plays in the early evening too. It's quite amazing to see this two rabbits horsing around on the front lawn and then grazing on our weeds. We feed Mr. Bunny carrots, spinach and lettuce leaves to make sure he wants to stay!

Then we observed the birds on our bird feeder. The boys and I set up our birdfeeder together last fall. This spring I picked seeds designed to attract finches, doves and cardinals - and boy, was I successful! Bright yellow finches and beautiful red cardinals... and the occassional dove eating on the ground.

Next, we went to our backyard to check out Mrs. Dove. She has made a nest on the top of our awning (which is retracted right now). Kurtis looks everyday to see if there are babies yet. So far, Mrs. Dove is just demonstrating her devotion to her babies by not moving. Kurtis has placed bird seed and sticks nearby for their convenience but unfortunately Mr. or Mrs. Dove hasn't used either (perhaps I'll move some away today ;) ).

Finally, after playing on our tire swing in the front yard, Kurtis asked for a jar so he could collect the ants climbing all over the tree.. LOOK how many there are! OK, ants maybe don't qualify but to a 7 year old boy, they're fascinating!

Children are such a gift - they open your eyes to the everyday miracles that occur in your own yard!

#3 Down and ramblings of the day

I finally made it in to the hospital last Wednesday night. It actually went relatively fast - I guess that's because I slept most of the time! The anti-nausea drugs knock me out. They don't just make me drowsy or a little bit tired, they put me to sleep. So I just went with the flow and slept. The first two times it really bothered me as I felt I was wasting so much time. I had books and magazines to read, movies to watch, journals to write in... and I didn't do anything. For someone who is used to being busy, 2 1/2 days of nothingness is just not acceptable! This time I just realized nothing much is going to happen during those 2-3 days of chemo other than sleep and have learned to accept it. I slept, prayed and watched a bit of TV. I've also discovered the secrets of the kitchen on the oncology floor so I'm also giving up on the hospital food and instead made myself toast and drank apple juice (it's what I live on for about 3 days after chemo). Not that I've ever actually eaten a meal delivered by the hospital staff - it usually just sits in my room and gets removed untouched as food wasn't ever desirable. But this time, probably due to the increase in anti-nausea drugs, the thought of toast was OK.

I'm getting to know the nurses on the floor relatively well now... they are a wonderful bunch and are quite compassionate, caring and eager to help. If only they still gave backrubs!

Today was a "good energy" day. I went for a good walk in the morning. The colours of all the flowers and blossoms were so amazingly beautiful and the birds were music to my ears. I forced myself to keep to a good pace and forced myself to walk just a bit more than the last time I walked. Then off to the mall to run some errands and buy the kids some summer clothes.... indulged in a moccaccino... and enjoyed a quick lunch with Tom. Then another indulgence - my every 3 weeks massage. Ryan rode his bike in the afternoon and Kurtis went on the go-cart. Not a bad day, eh? We love spring and summer!

waiting....waiting...waiting...

It's that time again. 3 weeks have just flown by and it's chemo time. Tom and I saw my oncologist yesterday and blood counts are up to par, so we were good to go. But, once again, they have no bed for me. So here I sit, at 11:45 am the next day waiting for the phone to ring to let me know if I can come down. We're going to have to talk to my doctor about a different method of admitting me because this waiting is incredibly frustrating - for me, Tom and the kids. But I have a feeling this is how the "system" here works.

Please keep me in your prayers this time that the nausea and fatigue can be minimized again. Also, I ask that you keep Kurtis in your prayers as well. He's having a hard time with me going to the hospital. On Monday night, he prayed "that there won't be a bed available" as he didn't want me to go to the hospital (and yes, he believes very strongly in the power of prayer now). His biggest challenge is bedtime as we have a routine that seems to be very important to him. So we're going to try "tucking in" over the phone and see how that goes.

...but does it qualify as a medical expense?

Before I tell today's story, I first have to give a bit of history.

Two summers ago (2004), Kurtis was begging for a "blow up thing"... this is one of those inflatable bounce'a'rounds that you see at public events like Canada Day or at parties (like this at ToysRUS). Honestly, the child was asking for it for his birthday, asking if he had enough allowance to buy it himself, praying for it at night... you get the picture. In August 2004, Tom happened to see one of them on sale at Costco so he bought it and surprised the boys with it. This is one of the best purchases we have ever made. It got used virtually EVERY day (except for rain days) for the rest of the summer and early fall. In fact, we used it so well, it's practically falling apart now. But the best thing about it is how it developed Ryan's gross motor skills. Like many kids with Down syndrome ("DS"), Ryan's gross motor skills were delayed due to low muscle tone. He didn't start walking until just before his 2nd birthday and at the time, was having some trouble learning to jump. Well, after we got that inflatable, Ryan's gross motor skills started developing rapidly until now, his gross motor is his strongest area. His physio therapist couldn't believe the development over that fall. So truly, it was the best toy we have ever bought... it's a toy that's well used, enjoyed by little ones and bigger kids and it was an amazing tool to help Ryan.

That brings us to today's post. We have been working on teaching Ryan to ride a tricycle for a long time now. Last summer he finally got the hang of pedalling, but for some reason, he just didn't grasp the concept of steering. So he often ended up going nowhere... or going onto the grass (which stopped him)... or hitting the car (which also stopped him). We both got frustrated! Well,, now remember that go-cart that Tom bought for Kurtis? Tom's been teaching Ryan to ride it. He taught him to push the lever to go and to let go of it to slow down. But the most amazing thing (as you've probably guessed) is how quickly Ryan has learned to steer! I was watching him today and I was amazed at how well he steers it. He corners great and steers exactly where we ask him to. So I brought out the "new" two-wheeler bike with training wheels to try and my little boy surprised me once again. He's riding a two-wheeler!! AND steering it! So once again, a totally fun non-therapeutic toy proved to teach my little guy something in a VERY short time that we couldn't in months of work. Do you think Revenue Canada will let me claim it??

My boys

An old friend, with whom I've recently been reacquainted, asked to see pics of the boys. I thought I'd post them here so that other old reacquainted friends can see them too.

One of my favourites - the first day of school, Sept 2005





















Ryan's famous grin:



















Kurtis thinks the leafblower is a wonderful toy:
















How old are you today Ryan?















We think Kurtis will be an engineer when he grows up. Right now, he wants to design rollercoasters when he grows up!! This is as exotic "marble run" we saw at the Baltimore Science Centre. He was fascinated by it and spent most of his time watching it and figuring it out.

Update - April 20, 2006

Overall, chemo went better than last time. I got the "good" i.v. drug ordered for each day - unfortunately, although they can only give it to me every 24 hours, it wears off around 18-20 hours. I need to talk to the doctor about that next month! I was also more aggressive on taking the oral anti-nausea meds. But, although the sickness was less intense, it went on longer. I'm sure part of that was because I had an additional day of chemo as well (due to the new chem we introduced). I'm still struggling with low energy levels but am learning how to manage them better. I'm finding that a walk every day actually helps with my energy so I'm going to keep that up. It's easy right now as the weather is so beautiful - the birds are chirping and the flowers are starting to bloom! I'm also learning not to overdo it and to listen to my body more. So as much as I wanted to go out to lunch with my husband today, I knew I needed to stay home and get some sleep as otherwise I will pay for it later this afternoon when the boys are home.

Happy Birthday Kurtis!

Happy birthday my love! You are an amazing kid and we'll always remember your birth day as one of the two most special days in our lives! Love your Mom and Dad

Kurtis got a bit spoiled yesterday - but,, that's what's supposed to happen on your birthday, right? First, we start with breakfast - whatever breakfast he wants... Well, Kurtis's favourite thing is an egg "mcmuffin" (english muffin, egg, cheese and ham or bacon). He loves them at the market, at home... anywhere. Unfortunately, our stove and oven broke last week so I can't cook it for him. But there is one place that makes them! So off Mom and Kurtis go to breakfast at McDonalds. What a treat it was to start a special day off with some special time with my big boy! Then a quick stop at Tim's for some Timbits for the class treat. His requested birthday dinner was pizza (ordered in, NOT homemade) and ice cream cake from DQ. According to Kurtis, this was just about a perfect day - food wise! LOL

We opened presents and then Dad brought in the big present... I wonder who actually enjoys this toy more? I think Tom is a bit jealous - he wishes they made it in an adult version!! Kurtis and Tom have been talking about building a go-cart for 1.5 years now, but when Tom saw this at a scratch'n'dent sale at Canadian Tire, he couldn't pass it up!

Ramblings from the hospital..

I got in on Thursday so I'm on day 2 of 3 day chemo. It's going slightly better than last time but still struggling with minimizing the yucky side effects.

Thank you to all my friends and family.. your love and support has been overwhelming and I want you to know how much I appreciate it. To those of you who send cards and emails, to my friends who visited me today even though I wasn't great company, to those of you making special foods for my special diet, to my sister who comes up to help me shop and comes to visit,, to my parents who are always praying for me..THANK YOU. And mostly thank you to my amazing husband - I LOVE YOU!

Hair - it's gone... totally absolutely gone. I got it shaved off on Wednesday night as it was getting very thin. Kurtis says I look like a boy and Ryan still won't come near me unless I have a scarf on.. I asked Ryan to give me a kiss and a hug and he says "noooo". I ask him where my hair is and he points to the ground and then makes a throwing action with his hand. I say "yes, it fell to the ground, didn't it" and then he signs "silly". He'll get used to it shortly I'm sure. It is a bit of a different look though! I don't think I'm quite brave enough to go out in public like this. On the plus side, I have a great new wig that I really like - me, the one who said she probably wouldn't get a wig, may now just wear it more often than not! It's strawberry blonde and the style is fairly similar to what I had just before I lost it. Scarves have been rather hard to find - at least ones that are stylish and don't make me look like a scullery maid! LOL

No chemo today.. The Repeat

There was no bed available at the hospital... so we come home and wait for a phone call tomorrow. It's a bit frustrating having driven all the way there,,, made arrangements for the kid,, etc etc, but we always knew that there was a risk there'd be no bed available.

My blood counts were good (YEAH!) and we discussed the recommendations from the other doctor. We're adding another drug as recommended but that also means another night in the hospital - 3 nights now - and it may mean more nausea and fatigue. We'll see how this round goes.

Glory- for Jane

My sister bought me a book called "The Valley of Cancer - A Journey of Comfort and Hope" by Angelina Fast-Vlaar. Here's part of a poem that I read last night that touched me very deeply. Thank you Angelina for sharing your gift of poetry and writings with those of us going through this terrible valley.

Glory - for Jane
...Jesus said that every hair of my head
is numbered and that not one
shall perish without His knowing.
I ponder these words and hear Him say,
Draw close my child;
let My love be your covering.
Feel My hands
upon your hairless head
and hear My tender words
of compassion and comfort.
Rest, relax, I will cover you
during this time of trial and tears.
And when your beautiful hair
has all grown back there will be
glory of a deep dimension
because you have walked with Me.

No chemo today..

They moved it to Wednesday in order to receive the report from the Doctor at Mount Sinai. I feel like I just received two free days! It's silly as all it's done is move it over... and thrown a wrench into Easter plans, but somehow I still feel excited that I've got two "extra" days! I guess it's because I've got more energy over the past few days. just in time for them to knock it out of me again...

My sister came up to visit today.... We dropped Ryan off at a friend's house (a WONDERFUL friend she is!) and then went shopping! I got one great hat and some cool lime green slides. Nothing like some great shoes to cheer a girl up.

Tom and I are taking the kids to Chucky Cheese tonight. We had promised to take them for Ryan's birthday back in February but between March break and chemo and recovery from chemo, we haven't really had the time or the energy. That place is just too much for me... too many people, too much noise, and a lot of work keeping track of the boys... but they LOVE it and that's why we do it.

Who needs real toys?

Kurtis's birthday is coming up soon and my spoiled boy can't think of anything he wants (although, funny enough, as I type this, he just popped by to tell me he thought of something he wants - yet another Hot Wheels toy- I should own stock in that company). But the past few days have been interesting as they've been having fun with other toys.

The boys have been having a blast playing with a cardboard box with a skipping rope tied to it. And here's something Ryan was playing with yesterday. This boy cracks me up as he very carefully put two pillows at the bottom to cushion the ride after the first trip down was a little bumpy.




!

Second opinion update

We saw "the sarcoma expert" , Dr.B at Mount Sinai in toronto for a second opinon on referal from our Dr. C at Grand River Cancer Centre... One of the drugs which is useful in attacking the cancer has lifetime limits and it may be that my battle with Hodgkins when I was a teenager may have used up some of that. The doctors will consult and let me know on Monday.

Dr B also suggested surgery maybe possible - which was interesting as Dr C dismissed it. That option is still quite far away as we need to first get through chemo before surgery is even an option.

We did get some news from my CT scan and it wasn't positive. I have a couple of tumours other than on the pleura (lining of the lung) and they're fairly large tumours. This was quite a bit of a shock as I had been told that they were confined to my pleura. Dr. B is suggesting a bit more agressive use of the chemo to get these "new" tumors in control. The good news is that my type of cancer is very responsive to chemo and they should be able to shrink the tumours.

Monday will be interesting as Dr C receives Dr B's report and we'll discuss what to do next. Dr. B was very optimistic and hopeful which was good too.

Calling all comedians!

I truly do believe that laughter is great medicine. So on that note, please send me all your funniest jokes.. Ok, even if they're just chuckle-worthy, send them anyways. Here's one that's kept me laughing for a while..

Why are do seagulls fly over the sea and not the bay?
Because otherwise they'd be called bay-gulls!

well,,, I thought it was cute.

Going..going..

Nope, it's not gone yet, but it won't be long. My hair, that is. It started falling out yesterday so I think I probably have 3-4 days of "good" hair before I have to start doing the covers. For the most part, this doesn't bother me - although I must admit I felt a twinge of sadness when I first noticed it coming out.

I went wig shopping last week with a friend but didn't find anything I liked, so I'm off tomorrow as well. I can't imagine that I'm going to wear this all the time. Having done the wig thing once before, I'm not eager to repeat it. I found the wig itchy, hot and generally bothersome. Then again, I don't like hats either. Guess it's a sensory thing with me. But, I'm going to try to get a wig for "going out" (wherever that might be as going out is a bit restricted due to risk of infection). I got some turbans today at HopeSpring (a cancer support centre) - but I hate that look. I also bought a hat and a scarf - so maybe I'll go the funky hat look! Or,, depending on how it looks, I just may go au naturel - especially in the summer. Maybe I'll even post a picture with the new "do"!!

The latest update

So here's what's happened in the past few weeks...
I had my first round of chemo on March 20. The chemo I'm on has to get infused (via iv) over 24 hours so I'm admitted to the hospital. I also need to get an infusion of a drug to protect my kidneys as the chemo is very very hard on my bladder and kidneys. This takes 12 hours. So, in all, the chemo took about 40 hours in total. The chemo was rougher than I had anticipated. I had heard how they're able to control the yucky side effects of chemo with good drugs... Let's just say, we now know which drugs work for me and which ones don't!

I've seen a dietician (the same one we use for Ryan) and am working on including or increasing certain foods on my diet. I'm also starting certain supplements. Hopefully these changes will help deal with what is known as "chemo related fatigue" which I'm already experiencing.

I'm seeing an oncologist at Mount Sinai today for a second opinion. I'm hoping this doctor will agree with the protocol that I've already been given - it means I'm in good hands and then I have no decisions to make. I am so thankful for my cousin, "D". She's an pediatric oncology nurse practitioner and has been such an amazing source of information and of comfort. She knows the questions to ask and has helped me immensely. Thank you D!