In Loving Memory

My mom passed away last night, peacefully, in her sleep at the age of 66.

It seems so surreal at this point. So unbelievable, yet it's there and it's all I can think about. And the next few days will be filled with a multitude of tasks and details to attend to.

Mom, you will be so greatly missed. We all loved you dearly and there will be a huge void in our lives.

I have so much to say, but I don't know what to put down... or how to say it. So for now, this is what it is.

Update on my Mom and me..

Apparently this round of chemo wasn't as easy as I thought. Sunday was rough again with a lot of nausea, vomiting and fatigue. Today the nausea is better but I am still extremely fatigued.

Tom is driving me to my parents' house today (as I don't trust myself to drive with this level of fatigue). Palliative care has been brought in to help take care of my Mom. She had two OK days when she came home from the hospital but hasn't been well since. It's important for me to be home at this time and be with my Mom, Dad and my sister. Please keep us all in your prayers.

Sunday Grains of Gratitude

1. I'm grateful that this round of chemo wasn't as hard as the last one. I'm feeling pretty good (9 out of 10 on the chemo scale) - what a relief! I just need to get a bit more strength back as I'm still feeling fatigued.

2. I'm grateful for the food people have brought us. We won't go hungry and I don't have to cook!

3. I'm grateful for the extracurricular activities my children can participate in. I'm thankful for the multitude of different opportunities that are available to them. On Saturdays, Kurtis is playing basketball and Ryan is participating in a music therapy class - and they both enjoy it!

4. I'm grateful for the laughter of my kids this morning as we all piled into one bed and giggled over silly things. There's really nothing like the laughter of little kids!

That old squeaky wheel...

I gave my letter to the doctor yesterday. I ended up seeing a different doctor (they work closely and my doctor was right there... they just were very busy) and gave the letter to her. But, we ended up talking about the events and what happened. She was VERY apologetic and said that never should have happened. She then gave me a number where I could have her paged directly if I wasn't getting a good response from the team. She then obviously gave the letter to the head nurse as she came and apologized to me as well. THEN... the letter made the rounds with the oncology nurses and they apologized as well (although it would have been a bit more tactful to wait until I was out of the room before distributing the letter!! LOL). The nurse who treated me also gave me her direct phone number so that I could call her if I was feeling terrible or had some questions. THEN... this morning I received a call from the head nurse checking in to see how I was feeling. I have a feeling I'll be getting great "service" now!! And I'm glad I received the response I did... at least I feel they "heard" what I was saying.

On another note...
hopefully my Mom will be coming home from the hospital today. She is getting quite anxious to come home, and I don't blame her. She's getting frustrated with laying in a hospital bed (you know they don't buy Sealy mattresses there) and the noise that generally occurs. We're thrilled she's able to come home so soon.

Now, I'm off for my afternoon nap. This chemo business makes one tired!

quick peek in

I haven't had time to write or even check email this past week as it's been another tough week but here's a quick update...

My mother has been in the hospital since last Monday evening. She was quite sick but is recovering slowly. For those of you who pray, can you please pray for my Mom.... pray for her physical strength to return but also pray for peace and comfort. Mom, I love you so much!!

I go in for chemo again tomorrow. Wow - it's been a fast 3.5 weeks! I've prepared a letter addressing my concerns and feelings that I will give to my doctor... can't wait to see his response! And I'm hoping this one goes easier! I'll be more aggressive with drinking as my cousin (who's a nurse) suggested I may have been dehydrated (which makes nausea worse). yum... gatorade!

And my baby boy lost his first tooth! I didn't even know it was loose and I don't know where it is. I just noticed a gap while we were in the grocery store this afternoon. I'm pretty sure the tooth was there this morning....Ryan isn't too interested in the fact that it's gone and hasn't expressed any interest in talking about the Tooth Fairy. Also, money doesn't mean anything to him, so what should the Tooth Fairy bring? Kurtis got $5 for his first tooth (the Tooth Fairy gets cheap on 2nd and more teeth). Perhaps she'll bring a Dora The Explorer book...

Isn't that picture up above amazing? I can't believe all those finches were there at once.

About Ryan

I've been writing a lot about Kurtis lately, so, as promised, here's something about Ryan. It's not a story but some information about Ryan. Ryan hasn't been "tagged" (something done in the blogging world) but I saw it on another blog and thought I'd use it.

3 things that scare me: Andrea Bocelli and Elmo singing one particular song on Sesame Street; sometimes loud sounds but not much else

3 people that make me laugh: my brother, my mom and my dad

3 things I love: Only 3??? But there's so much! music, swimming, dipping sauces, Sesame Street, horsing around with Kurtis

3 things I dislike: getting my nails cut, being asked to do anything I don't want to do, doing some of the homework Mommy makes me do

3 things I don't understand: why my parents don't think it's funny when I run away in stores; why I can't put ketchup on everything; why my parents won't let me get up and roam around when I'm awake...they keep insisting 5:30 am isn't wake up time yet and I have to sleep some more in their bed

3 things on the floor: 3 Halloween costumes I'm considering; about 10 books; the blankets off my bed (it's easier to jump on the bed when the blankets are off)

3 things I'm doing right now: eating breakfast (honey on bread with a glass of milk), watching Garfield the movie (yes, my Mommy is letting me eat breakfast while watching a movie at 7:30 in the morning!!) and teasing my brother (soooo much fun... he's so easy to bug!)

3 things I can't do: roller blade or ice skate - I really really want to because Kurtis does, but I haven't learned yet; play outside by myself; use a knife

3 things that best describe my personality: very friendly, very happy and a joker

3 things you should listen to: a dog barking (it means there's a dog somewhere close and you NEED to go pet it); me (I don't talk a lot but I sure have a lot to tell you); music

3 of my favourite foods: bologna; apples with creamy cucumber dressing as a dip; ketchup rice chips

3 things I'd like to learn: anything Kurtis is doing; ride a bike; use a knife

3 of my favourite drinks: juice, pop and chocolate milk

3 shows I watch on occasion: Sesame Street, Dora the Explorer and Spongebob Squarepants

Finally...making it back here...

bad bad blogger.... not keeping everyone updated...

Anyways, here's the scoop:

My last "chemo" post was on a Tuesday. I actually didn't start feeling better until the Saturday after that post. So in all, it was a 9 day haul. Thursday and Friday were good... I don't really recall Saturday and Sunday as I slept through them... and Monday through Friday were tough. I dealt with nausea and occassional vomiting the whole week. I was fatigued beyond belief too. Then on Saturday, I was better.... energy still low but MUCH MUCH better and I was no longer nauseaous. I've been feeling much better since then as well. My appetite is returning and my energy is back to its normal low levels.

I am quite ticked off with my "support" team at this new hospital. I called them 3 times when I was sick - I have been through 4 types of chemo but had never felt this bad for so long so I needed to know if this was normal or if I should get some blood work done (ie for transfusions or injections to increase cell counts). They returned my calls the first two times but the information I got was less than helpful and a bit patronizing and I never actually spoke to my doctor or his nurse. They didn't even return my call the 3rd time.

When I went to get my bloodwork done this past Tuesday, the assistant made some comment about me "calling a lot". I told her that I was feeling VERY very bad. She then commented along the lines of: "well... sometimes you just need to just bear down and get through it"... I told her it was easy for her to say! ooohh I was mad.... exactly how many chemo treatments has she gone through? I then told her I was nervous because I thought I might be getting one of the nasty side effects... she replied that "oh.. that would take much longer to happen and it wouldn't happen like that"... and I would know this how?? I don't have a medical degree! Would it have hurt them to address that concern of mine with some compassion?

The nurse taking my blood was much more sympathetic and said I definitely need to tell my doctor how bad this chemo was. I lost 10 lbs (although I've now gained 5 of that back - it was probably mostly due to fluid loss) and a week of my life. This may be par for the course for this chemo for me, but in no way did they prepare me for this... or reassure me as I was going through it. I am so disappointed with their lack of compassion and understanding - especially this assistant.

I'm going to put the facts and my thoughts on what happened on paper and give it to my doctor. This way I can deal with it unemotionally and calmly.... and he can understand what happened. I realize they are busy.... I realize they probably get inundated with phone calls from people complaining about every little thing... but that doesn't mean they still can't reply with compassion and reassurance. It's tough enough going through chemo and dealing with side effects that are scary... we don't need to be patronized or ignored as well.

Grains of Gratitude

This is a post I started on Sunday (hence the date) but never finished until today (Friday, Oct 13).

My friend, Christy, has a Sunday "Grains of Gratitude" post. I won't be doing this every week, but I thought I'd do it for Thanksgiving. So, here are some of the things I'm thankful for. (And yes, I'm incredibly thankful for my family and friends, but because that's so obvious and something that permeates every hour of my every day, I'm not going to include that in my list).

1. I'm thankful for Fall. Autumn is my favourite season of the year. I love the smell in the air. I love the crisp, cool air in the mornings. I love the crunch of leaves as you walk through them. I love putting on a sweater for the first time. I love fall colours - rich greens, golds, reds and oranges. I'm thankful for all the seasons, actually. Each one brings its own unique attributes and each is beautiful in its own way. And I'm thankful that we get to experience all 4 seasons where we live. But fall is the best.

2. Right now, I'm thankful I have some extra padding on this body of mine. This is something I never thought I'd be thankful for! I lost another 5 lbs this round of chemo. I don't want to lose weight and am working on that,,, but I'm thankful that these 5 lbs are not a big deal right now.

3. I'm thankful for the gifts Down syndrome has brought our lives. This really is a whole other post, but in short, Ryan having Down syndrome has brought me some wonderful friendships, it has taught me a lot about what is really important in raising a child, it has brought me a closer relationship with God, and most important, it has taught me about TRUE unconditional love.

4. Believe it or not, there are gifts I have received as a result of this horrible cancer. I am thankful for the openness it has brought to my relationships with my friends and family. I've never been one to tell people "I love you" (other than my parents, Tom and my kids), but it's easier now. It's easier to tell people how important they are to me and how much I think of them. And for that I'm thankful - as these people deserve to be told that! I am also thankful for the love and support I have received. It is a wonderful gift to feel connected to loving, caring people.

A quick update...

I'm still recovering from this chemo... it has knocked me flat. The first two days (Thursday and Friday) were fine. In fact, I even went out on Friday night to a pub for a short while as the "old gang" was meeting a friend who was visiting from Austria.

Then Saturday hit... I slept almost all of Saturday and Sunday. I thought I knew fatigue - but this was overwhelming exhaustion. I managed to make it out of bed on Monday for a while but still slept most of the day. Today is a bit better, but I still have virtually no energy and have mild nausea. I talked to my oncologist's office and they say it isn't uncommon and it seems (of course) that it is hitting me harder than most people. I have managed to eat a bit yesterday and today ... I know I should eat as I won't regain energy without nutrition, but it's so hard when you're nauseaous and don't have an appetite.

I continue to covet your prayers... especially during this rough one. Thanks.