Blog Bird Background - a Reminder that God knows and still cares- even about my hair falling out.

Matthew 10:29-31 "What's the price of a pet canary? Some loose change, right? And God cares what happens to it even more than you do. He pays even greater attention to you, down to the last detail - even numbering the hairs on your head! So don't be intimidated by all this bully talk. You're worth more than a million canaries. (The Message Translation)

Tuesday, March 20, 2012

Awesome dresser!

My friend Kat made this using Contact paper (Green) and packing tape (blue & pink) purchased at Target!! I have two plain white dressers that I'm so trying this with!

Saturday, October 23, 2010

So many things in my head!

I've got a bunch of things rolling around in my head that I could totally blog about, but I think for now I'll just stick with a health update.

Over the last 3-4 weeks, I've been getting NPlate injections again (if you remember the trial drug I was on a while ago, it's the same drug, just FDA approved now and we're able to use it as the Doctor wants to, and not confined within the "rules" of the study.)

I've had 3 injections so far, and my platelet count went from 3 weeks around 22, 23k, up to 34,000, to 88,000 last Thursday!!!  The injections seem to be working while on the smallest dose so far, so please be praying that the dose doesn't need to be increased (That's where I ran in to bone pain from the bone marrow working extra hard to produce platelets) and that I continue to repspond to the drug. Originally, before FDA approval, I stopped responding to small doses and the dose had to be increased.)

That's pretty much all there is for now - Livi & Hunter think they run the doctor's office and even the ladies in the finance department who remember me from when I was pregnant with Liv come out once in a while and say "This is HER? She's so BIG!" just because they ALL remember that we were fighting for this perfect little 3 year old, along with fighting for me!

Speaking of the three year old:

Tuesday, August 17, 2010

8/17/10 "Catch Up"

Third round of chemotherapy was 8/6/10 and 50% of the way thru my treatment, I still have about 50% of my hair! It's not enough that I feel comfortable leaving the house without a hat, but it's enough I am ok with close friends and not having to have my head covered.

Went as planned - no crazy side-effects. I was running late because we had the appointment upstairs for William, and the scheduler had said "Just come downstairs when you're done" probably assuming his appt wouldn't take that long (Haha!). THANKFULLY they are both in the same office, so I was able to RUN down there when we were finished. I made the poor nurse manager poke my arm for the lab work knowing if she tried to start an IV fast before I saw the doctor, she'd regret it (since she'd likely be the one picking me up off the floor). She was distraught at the thought of sticking me twice, but I have horrible anxiety attacks when IVs are started. I literally get so lightheaded and dizzy that if I'm not already sitting down, I have trouble not blacking out for a good 20-30 minutes following. It is BAD.  It's literally easier for me to get a blood test done than have an iv started for whatever reason.

I got my 2 dose package of  Emend (anti-nausea meds) and one was pretty smashed up. The 2nd pill was obliterated. They are capsuls, so I poped it out of the foil to be covered in tiny beads of medicine and plastic pill parts. Thankfully, the nausea wasn't too bad, and I had another med to take. These pills retail for $115 EACH. While I only had to pay $40 for the two pills, I was still angry they hadn't made it in tact and by the time they'd ship me any more, it'd really be too late to cover the nausea from the chemo. Thankfully, the pharmacist I talked to was great about it and sent me two more, for next month, free of charge. I guess when drugs cost that much, you get GREAT customer service. :)
My count that day was 7,000 and Dr K was REALLY hesitant to let me go home without any additional treatment. The problem with that was that the month before she started the Plaquenil 1 week following chemo and we have no way of knowing if the extra nausea and yuckiness I felt was from chemo or Plaquenil, additionally, we had no way to know what helped my count go up! I reminded here there was a teeny amount of steroid in the IV (to help with nausea) and that my kids would be gone ALL weekend, and I promised to stay in bed. With that, she let me go and happily, my platelet count was up to 19,000 the following week! I go in again Friday to have my blood drawn again.

Sunday, August 8, 2010

Days like today...

As much as I try, it's just all too much. The huge influx of medical bills, the insanity with feeling like I'm so sick I can't even manage to listen to my children chatter at me like they do - the frustration and tension that comes with everything coming at us so fast and furiously. Some days, like today, it's just too much. I can't keep my chin up, I can't make it better, I can't fix anything, I can barely walk across the room. It's days like today I wonder where the big miracles are. Sometimes, I don't even want a big miracle, I just want God to remember my name - and remember we're here, trying our hardest to do it all right. I'll write about Friday in a little while...I need to cry a little more right now.

Thursday, July 22, 2010

Sleep Deprived

I wonder where I might find some pretty purple scarves and shirts to match the bags under my eyes? I don't know if it's because I'm "sick", but I know one thing for sure: I'm not sleeping at night. I've had trouble getting to sleep at night and I'm not really sure why. Last night I was awake until at least 3 (the last time I looked at the clock) and one night I was literally awake all night long - until 5:30. Joel's alarm went off at 6 and I got up to talk to him for a bit, then back to sleep until the kids woke around 8. That was NOT a great day following, let me tell you. I don't know why sleep eludes me. Maybe it's the Plaquenil, though, nothing in the medicine info says it causes insomnia (upset stomach? Yes. Oh, boy, yes). Maybe it's the combination of everything going on in my body and I just can't get it settled down.

Needless to say, I'm pretty tired right now. It's my "tired" time of day when I really feel the most exhausted and run down - I need to figure out a new dinner routine. Either Dream Dinners or every single meal in the crock-pot or something. I'm just too tired to stand in the kitchen & cook at night - and supposedly, the exhaustion gets worse. Joy. :)

I know this isn't the most chipper, upbeat post. I'm extremely tired today. Though, overall it was a good day. I got two of the kids rooms cleaned & vaccumed, my bathroom is started being cleaned (rugs up, counter cleaned off, so tomorrow I can actually clean it and be done) and all the clean laundry folded and put away. I love that feeling, plus it helps me sleep at night without the "mess" of clean clothes needing to be folded sitting on the floor in my room. It was a productive day, I'm just tired.

Monday, July 19, 2010

7/19/10 Lab Results and Hair Issues

Platelet count today was a whopping 15,000. I was told by the nurse that Dr. K was out today but if the on-call Dr wanted me to do anything differently than what I was, she'd call my cell. I never heard back, so I'm guessing I just take the Plaquenil until I hear from my own Dr. tomorrow. If I don't hear, I'll call them tomorrow afternoon and see if I am supposed to change anything, or when to come in for another blood test.

In other news - yesterday I did my hair and asked Joel to check for any "holes". I asked if I should just wear a hat or scarf, and he hemmed and hawwed for a few seconds and I finally said "If I need to do it, just let me know!" He suggested I might feel more comfortable wearing a scarf or a hat.

I officially "need" to wear something on my head when I leave the house. I'm not going to say I didn't have a difficult time with it. I cried. I felt awkward walking in to the party for the first time with short hair and a straw cowboy-style sun hat. They're totally in style, and, it's a cute one. I got a ton of compliments on how cute I looked. I still felt awkward. It's probably just because I knew what was underneath.

Have I mentioned that I have the most amazing husband? I do. He never fails to give me a shoulder to cry on, arms to wrap around me and hold me tightly, prayers at any time, day or night, and an ear to listen. No matter how many times I have said "I hate this!" or "I can't do this anymore" he always listens without judgement and reminds me I can, and that we'll do it - together. I have cried at the thought that before the beginning of time, God knew this was the man I was to walk this journey with, and made Joel with an amazing patience and grace for carrying "the weight of the world" on his shoulders without looking like he's weighed down at all. In fact, he says he's happy to do it. And that knowing what he knows now, he'd marry me again, a hundred times over. It's funny how, when you get married, you think you can't love a person more than you at that very moment. But, as time goes by, the longer I am with Joel, the more I simply cannot fathom life without him. He is a good man.

I could write about Joel all day. :) But, back to hair loss, since that's the topic of the hour. The woman I met with at the wig-shop said to shave my hair no shorter than a "3" guard when the time came. There's no reason to bic it all the way off, according to her. I am not choosing to lose my hair. In fact, though I "chose" to cut it off, and soon will "choose" to shave it, it's not really  my choice. I am sad. I like having longer hair. I like being able to curl it and straighten it and make it pretty for 'date nights'. I am very sad that I'm losing it, especially knowing it will take so long to really grow back in again after the chemo stops (4 more months) and even then, knowing it might never be the same again. My friend Abby cut her hair short by choice. She had literally, the most amazing long, healthy, thick dark brown hair I have ever seen in my life. Could I just have taken HER hair, I would have in a heart beat. Abby is beautiful inside and out, and she looks absolutely amazing with long or short hair, or, even a shaved head. How do I know? Because she did shave her head! I think it started as a color issue the first time, if I remember right, and she decided to just shave it. It had already been short on the sides and longer in the middle, so she did it in stages, but it ended up shaved. ALL OFF. Abby did hers as a choice. Abs is confident, and amazing and has overcome so much in the last few years. She looks beautiful with or without hair - and her confidence shines. I don't feel so confident. I don't feel too shiny or brave or awesome. So, I've asked Abby to come and help me shave my head when the time comes. I'm sure I could do it by myself. But I feel like I want a little bit of her strength and confidence to transfer to me when the deed is done. And, thankfully, she has agreed.

Today I nearly left the house without my hat - I totally didn't think about it, simply because it hasn't been necessary until now. I can see this whole thing will be taking some getting used to. Also, I can see it's about time to place the order for the wig.

Right now I'm watching Beverly Hills Chihuahua with the kids, so I'll close. Tomorrow is another day.

Party on Down!

Yesterday we went to celebrate the Birthdays of our good friends' little boys. Jarek turned 5 and Jakoby is the big 0-1. Both are adorable and super sweet and it's clear that Erik & Sharon are amazing parents. I think Sharon stresses about her job as SAHM sometimes, so I think it's important to tell the world what an amazing job she's doing. It's very evident the time and energy she's poured into those boys, and she's a great mother, and one I often try to copy (especially in the mopping arena!). And I'm not just saying all this because she's my friend. I like friends that are "iron sharpening iron" friends, and I for sure think Shaon is one who makes me want to be better and everything I do. I love her.

There are a few things you can always count on for Jarek's Birthday Party since the M's moved here: Great weather, a big backyard BBQ, and plenty of water games for all the kids to play in (wading pool, slip n' slide, sprinkler, water balloons, squirt guns...). In fact, we don't even put our kids in "actual" clothes - we just put them in swim trunks and matching shirts (Liv of course wore her ADORABLE new eyelet swimsuit cover up and her straw hat with low pony was ridiculously cute!!) so they can just peel off the top layer and GO!

I love getting to see my friends, the kids getting energy out and being exhausted at bedtime and the kids love pretty much everything about Erik & Sharon's. What's not to love?!  Here are a couple shots from the day:

Joel taking his turn during the adult's game.

William skipping!

Soak the sponge in the pool, run down the yard...

Fill the bucket!

Liv cut in line and took a turn (she wasn't even playing!)

Love the progression of these pics- Erik showing her how to squeeze it...

Erik may or may not  be helping her get her sponge rung all the way out. :)

Go, Will, GO!!! (as Noah checks out the competition!)

Birthday Boy Jarek. I love this kid!! He said he liked my new haircut. ;)

Birthday boy Jakoby James - my favorite baby of all times. (Except maybe Sanders)
(Signature M. drool on his shirt. LOVE IT!)