Tuesday, April 26, 2011

Better Late than Never

Guess who is back in the saddle!?!

They say that when you fall off of a horse, you're supposed to get back on...

The last 30 days have been rough. We are STILL in the hospital. Our Cole is in the pediatric intensive care unit and is being treated for fungal pneumonia, a second degree chemical burn from his chemo/antibiotic, staph infection, bowel infection, sinus infection, and pancreatitis. Cancer sucks! But cancer where an 11 year old is concerned is disgusting... (Cole has been battling leukemia since 2007; he relapsed in September.)

Due to the controlled medical chaos that has sort of become our life, I hadn't been to the gym in 3 weeks. I am happy to report, however, that Cole is stable enough now for Nate & I to go out in public again---IE: The Gym! (Children who are immunosuppressed need to be in a sterile environment, so we were staying here as much as possible.)

The last two nights have been nothing but cardio. Sweaty, butt busting, @ss kicking cardio--- and I loved every painful moment of it! Surprisingly, I didn't feel out of shape. My heart rate hasn't changed much. I sweat about the same. And my muscles felt SO GOOD. (And besides that, the few weeks of rest allowed my right ankle to heal up completely, so that has been a blessing in disguise.)

As far as weight goes, I went up 4.5 lbs over the last three weeks. (However, I weighed myself yesterday--- after a huge Easter Sunday lunch meal. Keep in mind, Nate, Cole, and I had not had home cooked food in a month. Damn you, ham!) Anyway, I didn't think my weight was bad for being stuck here with very little to do... I will see what I weigh later this week to gauge whether it was the potatoes and stuffing affecting my gain--- or if I really did put on almost 5 pounds. I was making healthy eating choices and tracking my calories, so there is a good choice that I only gained an actual pound or two. Regardless, it's coming back off, so I suppose it's silly either way. I think the most important thing you can do is just jump back on the proverbial horse when you fall off---- and I plan to ride that baby into the sunset!

Here's hoping everyone is hitting their own personal goals & doing well while I've been away!

xoxo
Sarah

Wednesday, April 13, 2011

I'm having one of "those" nights. You know---the ones that keep you up until 4 in the morning panic stricken and ready to freak out on the first person to ask you what's wrong... (Ok. Maybe only my other cancer parents can understand what I'm saying, but that's how I feel at the moment.)

Cole's fever keeps spiking higher and higher and his respirations have been all over the place tonight. They are entirely too high for my comfort zone, that's for sure... Even the nurse seems worried about him. *insert uneasiness here* This is NOT fair. NOT. I don't know what this "thing" is that has my baby (and neither does anyone else at the moment), but I wish it would just STOP. How can this be happening? Negative cultures. Negative blood tests. Negative EVERYTHING. And yet, the doctors and nurses seem unsure, and truthfully, a little nervous. Cole is currently a very sick child and they are treating him with some seriously powerful antibiotics... Really? I should sleep? Umm. Yeah. Get me some coffee; we're going to be here awhile... Michael Bolton could sing me lullabies until he's blue in the face, but he had better pack a sleeping bag for when he crashes first... Cancer moms often don't sleep. Not when things are SO uncertain. And scary. And nerve wracking.

Having just literally bawled my eyes out from stress and being overtired... let me tell you a few things that I think mothers should never have to do. (And I apologize ahead of time, but this is the only place that I can 'get it out.')

First and foremost, mothers should never have to:

Bury their babies.

I hugged a friend today in the pediatric intensive care unit just moments before her 7 year old daughter lost her fight against neuroblastoma... Can you imagine? We met because we are were both staying on the same floor of St. Vincent's Hospital with our children---both of whom are were fighting cancer. Horrible. Just horrible. I cannot imagine what they are going through tonight after leaving this hospital without their little girl... Can you? It brings tears to my eyes just thinking about it.

It's not right...

Next, mothers should not have to:

Climb the walls while watching their child's respiration rate climb on the monitor because of high fevers that are still completely unexplained.

This is where I'm at at the moment. We have been here ten days straight---and nobody has any exact explanation as to what is happening to our son. Our baby. Our life. The doctors (who are wonderful) have treated for viral, bacterial, and fungal infections. The cultures are all negative. And yet, Cole's up over 102 degrees and his respirations keep bouncing up and down. And don't even get me started on the fluid he's retaining... This is NOT fair. Not even for a moment.

And third, mothers should NEVER have to:

Live in a hospital & have to try and make it feel like home.

Really? Does any child deserve that? Our family has spent SO much time here over the course of the last six months that I have a suitcase full of Cole's decorations just for making it "feel" like home. And the truth is, it doesn't matter how much freaking decorating I do. I could call Martha Stewart herself and have her paste green decoupage on the wall all day long! This place would still be a hospital... It would still NOT be home. And I would still want to tweeze my eye brow hair out one-by-one to make sure I wasn't dreaming about this being our current reality... (Real cup of sugar I am tonight, hey? I told you I had to get it out...)

And do you know what else a cancer mom should NEVER have to do?

Defend herself.

EVER!

No matter what.

Did I mention 'ever?'

If you have never been a part of this life, then I'm sorry, but you DON'T know exactly what cancer parents go through and therefore you CANNOT judge our lives when you don't disagree with something we say, do, do not say, or do not do. (And if you're Christian, you shouldn't be anyway, but I digress...) Ask any one of my cancer parent friends and they will back me up 110% on this. A momentary glimpse into our nightmare is one thing, but you cannot imagine the pain, anguish, stress, and anxiety that goes into EVERY day and night. This is a long, hard, difficult journey that takes a toll on an entire family. And it will chew you up and spit you out if you let it... That said, I have heard some terrible things about myself for at least six weeks now. And I have hid them from everyone except my husband, because I was deeply embarrassed that someone could think them about me. Multiple sources have shared painful revelations that were spoken about me by people I trusted with my whole heart and soul. Here is my final word on my faults:

-I am sorry that I'm MONTHS behind on thank you notes. It's true. Months. I simply cannot keep up... I can barely find my desk and keep up with day-to-day tasks. I'm really sorry. You all DESERVE thank yous---ten times over!

-I'm sorry I didn't put the thank you in the paper following the benefit that was put on for Cole the end of November. We were rushing to cram in Cole's birthday, Nate's birthday, the benefit, the holidays, Christmas shopping, specialists, family time, lengthy inpatient stays, and then add in our day to day life as well. I am NOT now, nor have I EVER been, ungrateful. My heart broke into a thousand pieces when I heard that. I guess I thought I had been abundantly thankful, publicly and privately, for the love, kindness, and generosity shown to our family. Where would I be without all of you!? I guess if I knew that the lack of a big fancy article in the paper would make so many people genuinely hate me, I'd have had it printed on every page... I'm sorry for that.

-I'm sorry I haven't mentioned every gift given to Cole in this journal individually. You all certainly deserve a public thank you, but I have been incredibly overwhelmed by the pace and stress of our life. I'm sorry for that too.

-I'm sorry that I have calls & emails I've never returned. I literally have emails that are a month or 2 old waiting to be properly responded to. You all deserve better--- especially having reached out to me. Again, I'm sorry. I'm doing the best I can.

-And yes, I still have someones crock pot at my house, because I've been too busy to return it... I'm really sorry about that too. You were kind enough to bring me a meal, and I haven't even been able to drive your cookware back. Sorry. Please forgive me.

I guess the moral of the story is that I am not Super Woman, but I've been running around like mad trying to be for the last six months. It's taken it's toll on me. I can't do it anymore. What I need to be right now is a Mom. Only a mom. Just a mom. I'm sorry if I haven't done the things you'd have liked me to do--- or even that I probably should have done. And I'm sorry if you are angry with me because of that. I hope someday you will forgive me and consider the incredible pressure we are under every single day...

And lastly, no mother should ever, EVER, ever have to:

Beg God to spare her child.

Which is precisely what I've spent the last few hours doing. I don't know what is going on with Cole medically, and quite frankly, neither do the doctors. God knows---but he isn't telling. And so we've had a very long conversation tonight. I have to believe that tomorrow things are going to be better... He will provide. At the end of the day, everything we have in our lives is retractable---save for our faith. And so I'm trying my hardest to trust that God knows what he's doing. Truthfully? It's the most difficult thing I've ever asked myself to do...

I'm sorry for my ramble tonight, but I NEEDED to get this stuff off of my chest. It's 3 am. And I just purged six weeks worth of stress, anxiety, and bitter disappointment into this one update. Liberating? Yes. Do I hope you still love me? Yes! But if you don't? Well... I will have to be okay with that, because I simply don't have the energy NOT to be.

Goodnight.

Sarah

Saturday, April 9, 2011

Sometimes I...

Sometimes I...

...feel as though the world is moving SO fast. And here I am. Feet glued to the ground.

...wish God would breathe his peace & reassurance into my weary soul.

...wonder why most of this life has been an uphill, tooth-and-nail, have-no-mercy battle against adversity.

... feel as though God is grooming me, training me, for a cause and reason bigger than anything I could have ever imagined.

... think I could fall down in tears or laughter at any given moment.

... think that my shoulders can't possibly be strong enough for the responsibility that God has laid upon them.

...wonder who I might be today had I not found my faith.

...consider that I might not be living up to the high expectations that everyone around me seems to have.

...feel that I should confess that I'm not half the woman my mother is. She is the epitomy of strength.

...should just say what's on my mind and stop trying to be kind to the people who aren't kind to me.

... know in my heart that no matter what I might say, feel, or think---I'm probably wrong to a small majority. And that's ok.

...need to make a point of reminding myself that the 10% of people in my life with nothing good to say are in the minority for a reason.

...need to remember to stay the course, trust in Jesus, dig deep, and never forget what got our family to this point in our lives: God, friends, family, and most importantly, eachother.

...marvel at the quality and caliber of the wonderful people God has placed in our life to support us.

... feel as though we are the most richly blessed people in the world.

... think that I just need to get it out. Which is what I just did.

Thank you. :)

Sarah

“Lord, we ask for your healing Hand to be laid upon our son Colton’s body today and always. We ask that you restore his Earthly body to be strong, healthy, and cancer free. Lord, ease his worry, pain, and above all, let Cole’s heart and soul be focused in the light and Word of Jesus Christ. I ask this is Jesus’ name. Amen.”

To follow our young son Colton's journey through relapsed leukemia, please visit: www.caringbridge.org/visit/coltons . Thank you & God bless!

Sunday, April 3, 2011

Sorry for the absence. We are back in the hospital with Mr. Colton as of last night. His site has been updated:

www.caringbridge.org/visit/coltons

Enjoy your weekend!

Sarah

Friday, April 1, 2011

A Celebration Is In Order!


Guess what today is! Come on, guess! Do you know? Do you know? Do you? Do you? DO YOU?

Today is the day I graduated from astronaut school and signed up to go to the moon that I have OFFICIALLY lost 25 pounds! Well, actually 26.7, but then.... whose counting?! :)

I am OVER-THE-MOON pumped! I am just SO VERY proud of me! A healthy body all but guarantees me a longer life with the people I love---and that's reason to have a glass of wine celebrate!

And no, for those who have asked how I am doing this, it's NOT easy... It's a daily struggle most days. I am hungry sometimes, but it's only when I haven't taken the 5 minutes that day to plan my eating out. A friend told me: "One healthy decision at a time. Be conscious of everything you do, all day long." I literally track EVERYTHING I eat---right down to the butter on my bread. I know how many calories it takes to power my body for a day. I also know how many calories I am allowed to have to lose 2 pounds per week before adding in exercise. I drink water like a crazy person and I force myself to eat 5 times per day. And for the record, I haven't specifically given up anything. (Well, except fried foods, but that is because it upset my stomach so badly. I never realized what was causing my stomach trouble until I started tracking what I was eating.) Everything I eat is in moderation though. EVERYTHING! If I want a piece of chocolate and it fits in my caloric plan, I know I can only have one. If there's something I'm not sure that I can stop eating, I don't have any. Like cake. (Damn you, cake...) To my surprise, I still have ice cream! A half a cup, but I have it---and a half cup is just as delicious as a whole bowl if eaten slowly and savored!

And then there's the torture exercise... I love it! Well, I love what it does for my ass body. My skin is absolutely glowing most days now. As far as calories, there has never been a day at the gym or pool that I didn't burn at least 600 calories working out. And no, I do NOT eat those calories. They're not "free" to use. It is my deficit---and for good reason. I run, swim, bike, weight lift, spin, and do all kinds of cardio and resistance training. Random fact: I'm never bored at the gym. Ever.

So, today is a happy day! My 25 pound reward is a pedicure and a new pair of jeans, so Jacque and I will be heading to Appleton to cash that in here soon! Very excited since sandal weather in Wisconsin is never coming!

Thanks for coming along on this ride and for supporting me, dear bloggy friends! A lot of days you give me the little kick in the butt I need---and I appreciate that SO much!