Sunday, May 28, 2006

#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

Saturday, May 20, 2006

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.

Wednesday, May 17, 2006

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.

Tuesday, May 16, 2006

Happy (belated) Mother's Day

I hope all you mothers reading this had a wonderful 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.

Wednesday, May 10, 2006

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!

Tuesday, May 09, 2006

#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!

Wednesday, May 03, 2006


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.