Sunday, April 22, 2012

Happy Birthday-to Me!

Yes, today I turned 41 years old.  And it was a lovely, low key, stay in my jammies, watch movies and hang out with the family kind of day. 
I want to thank all of you who left emails and fb messages and texts for me today-there were over 200, and it really makes me smile reading all of them!  I am truly blessed!

I had treatment #3 on Friday, after much debate about why my white blood cells look 'funny'.  The lab didn't want me to get my treatment because they looked 'funny' under the microscope.   My  NP told them since I am getting the Neulasta shot she would expect them to look funny, and if they couldn't give her a reason other than that NOT to do my treatment, then I was getting it.  That took 3 hours of the meantime, funny or not-my WBC's were 17.8 and my neutrophils were 7.6 all in good range!

Woke up a little nauseated about 6am this morning, took my meds, Brian made me some toast, and back to bed I went til about 10am.  I've been feeling great since then, taking my meds on schedule really helps.  I'm working about 5 hours tomorrow, then get my shot in the afternoon.  Then I'm sure I will be home to sleep for two days. 

The bald kid has an appointment at Pulmonology clinic on Wednesday, we may finally get a release from there since he's been off his oxygen for so long.  I think they still need to manage his Robinul for his secretions, so that may keep us going back for appointments for a while still.

Saturday we drove up to Lawrence to watch Hailey's step-sister Mariah play softball-KU against Iowa St.  It was a beautiful day for their Pink in the Park!  Too bad they lost-but it was still a fun outing. We got there early, tailgated with Hailey's Dad and her other 'Mom's' side of the family.  My die hard K-State sis and bro-in-law cheered for the Hawks, and my die hard MU husband even bought a KU shirt he sported just for Mariah!!  After the game Mariah gave me her LIVE PINK  KU warm up tee-I love it sweets-thanks so much!!
 I, of course, had my scarf on and two lovely women came up and introduced themselves to me, sharing their breast cancer survivor stories and ensuring me that there is indeed an end in sight and that I am a survivor too!  It's not a club I ever wanted to be a part of, but damn it's got some awesome ladies in it!  Kind of like my Special Needs Moms Club-nothin I can't handle with the support from some amazing folks!

Heading to bed, gotta get up early.  Though I do have to say, not having to 'fix' my hair sure gets me places on time!

Yes, she's that much taller than me!

Mariah Montgomery #23-Home Run leader for KU!!  Hailey, her other Mom Kim and her little sis Gracie

Tuesday, April 17, 2012

Gypsy or JT?

Since shaving my head last week, I've been experimenting with some new looks.....

The Gypsy look?

The Justin Timberlake?

I'm not sure which I like better yet.  Still playing around, these are just some wigs I had at home already-neither of which the kids would let me go out in public in.  I'm definitely not spending too much time without something on my head, cause it's amazing how cold you get with no hair on your melon.  The first night I was hairless I slept with a stocking cap on my head!  My ears get cold too, even with a scarf or hat on! 

A big thanks to my friend Andrea who shaved my head!  Love you bestie! 

before the shave off

Andrea and her sister Benja have been acquiring hats from all over the country for me to wear!  I have some darn cool ones from Michigan-thanks Mrs Williams and Colette's sis!  From Colorado, Washington and even a cute one with a moose on it from Montana! 
A friend and I are going wig shopping in a couple of weeks.  I figure I need at least one cute one to wear should the occasion arise that a hat with moose on it, my gypsy or JT wig, or a scarf don't quite cut it.  Though the bald look is ok, as I mentioned above, my noggin gets pretty chilly in this weather. 
The scarf look does afford me some perks though.  At the movie the other night I was able to substitute an icee for a soda when it was clearly marked 'no drink substitutions'.  And the sweet little boy at the concession counter even mixed mine to order-coke and wild cherry.  The lady after me wasn't very happy when he told her no.  This cancer bs ought to get me some perks right? 

My counts were finally ok enough to go to work this week! Yeah!  I worked an 8 hour day shift on Monday and am working tomorrow (Wednesday) too.  I was really worried that this Friday is payday, and I know I had no more PTO left, so things were gonna be a little tight around here.  So you can imagine my surprise when I got to work yesterday and checked my 6 week old email account to find that the awesome, kind people I work with have again donated hours of their PTO to my account!  Looks like the hot dog and ramen noodle menu can be replaced with some chicken and hamburgers!  I don't get emails with who donated time, so I can't thank everyone individually and personally, but please know you make my heart warm and are making this journey much less stressful for us!

Work was good, felt great to be a productive member of society again-even if it was only for 8 hours!  It didn't wear me out too terribly bad, I didn't even yawn until the last 7 minutes of my shift! I got lots of hugs and smiles and words of encouragement and support from all my co-workers.   I got home and seriously thought about taking a nap, but didn't want to sleep all day today knowing I had to get some sleep for work on Wednesday.  I did, however, change into my jammies at 5pm and plant myself comfortably on the couch and watched "We bought a Zoo" with the fam before heading to bed at 11 with my bedtime fave "Big Bang Theory"!  I am grateful and blessed to have a job that is willing to work with me through this!  Thanks again, NKCH!!

The bald kid showing his support with my stocking cap made just for me by the sis of a former CMH co-worker!  Thanks Bobbi-I've been wearing it with all these cool nights!  I can't wait til winter, cause she makes some awesome kids hats and having another bald person in this household-I'll need some new ones!  Check her out on facebook at Lil Monster Threads!

But like my bestie Carissa was hoping-my head is at least a nice shape-unlike a football, or mail slot or crater.  The bald kid still pulls it off much better though! 

Most often you will see me sporting a scarf.  This is me and my gorgeous little sister Kate.  And here's my plug for that lime green bracelet on her arm.  Kate had a golf ball size area cut out from behind her knee that had been a mole removed which came back positive for melanoma.  She turned 30 the day before this pic was taken-which was last week!  Thank goodness of the four moles she had cut out, only one was truly melanoma, but one other had 'atypical' cells.  Please, please, please wear your sunscreen, get your moles checked, and stay out of the tanning beds!  I was a sun worshipper for years, including loving my 30 minute naps in the tanning beds at Sarah's Flowers-for my Dotte peeps-covering myself in Crisco and baby oil and laying out on those silver mats!  My vanity stopped me from getting a ton of sun on my face a few years ago when a sun spot popped up on my right cheek (face cheek not ass cheek) and with more sun-got bigger and bigger.  So now I slather on the moisturizer with sunscreen, sunscreen, wear hats and

 'Our beds filter out the 'bad' rays' bullshit.

Spray is the way-that is until they determine the overspray we inhale causes lung cancer??!!?!?

 Until then, I'm happy with my pasty white skin-minus melanoma-and an occassional spray for special events!

Gotta get some zzz's.  Got another 8 hours to work tomorrow!

oh, and 19 day countdown to Disney!!

Tuesday, April 10, 2012

Hair today......gone tomorrow

Yep, the time has come. It's got to go.

When I went to chemo last Friday, they all commented on how I still had my hair, but not to get too used to it. So Saturday I showered and a dust bunny size came out easily.
Sunday-more dust bunnies of wadded up hair.
With Sunday came the fatigue and the nausea-but I figured out what I did wrong, or I should say 'out of order'. My first treatment I was waking up early in the morning and taking my first dose of nausea med before it really hit me, then going back to bed for a hour or so. Then when I woke up to face the day, I didn't feel too bad. This time I have been sleeping in, then taking my first dose whenever I got up for the day-sometimes judging, if you know me, you know I like my sleep! Anyway-not the route to go. I seem to be behind my nausea and am playing catch up all day then feeling good at night. Today I think I got back on track, and am actually feeling pretty good!

Then I took a bath. I have been on antibiotic for the start of sinus infection last week-which they told me would linger on forever. Awesome. Full head, popping ears, runny nose, sniffles, chills headache and sinus pressure that lasts for weeks!!! Just what I wanted! Since I felt less nauseated today, I thought I would take a bath with some of my detoxifying salts. The bath felt fabulous. Even helped my sinus pressure and achy joints a bit. Then I washed my hair. Tons of hair out in my hands. Made my hands shake, made me cry. I knew this was going to happen, but to be honest I'm really not prepared for it. I don't want to lose my hair. I don't want to see the look on Hailey's face when she sees me bald for the first time. It hurt her to look at all the hair in the trash can and vacuum up all the rest that came out when I blow dried it.
My friend Carissa described it best. She said looking at me now I don't look 'sick'.
Don't look like I have cancer. But once I'm bald, there will be no question. I don't worry about how other people -strangers will look at me. I'm worried about how 'real' this will all become for all of us once there is no denying it. But I am getting real tired of people hair all over my pillow and clothes and robe. And I still feel like I have a piece of hair stuck in the back of my throat I can't get rid of. The poor dogs are walking around coughing and continually licking their lips from all my hair floating around, I kind of feel bad for them.
So today is the day. It all goes. I can't stand another day of pulling it out in the shower and did I mention that my scalp hurts? It actually aches like from a pony tail or hat too tight, or a sunburn on my scalp. Weird feeling.
An amazing cancer survivor whom has taken me under her wing pointed out all the positives to losing my hair-no shaving my legs. No eyebrow plucking. Never not ready for tank tops. New fresh hair. Did I mention no shaving my legs??? And my personal favorite-no more money spent on color, cuts, and hair products (I'm kind of a product whore-it's in my genes I can't help it). My husband's fave: less prep time. By hours! Just kidding. But I'm sure we will get to more places on time now!

My friend Andrea is on her way over now to shave it off. And I'm sure there will be some tears, but just like how I'm going to approach every part of this crappy disease-let's do this and get it over with. Prolonging the inevitable won't make it go away, so I may as well grin and bear it.

Pics of the other bald person in our house to follow tomorrow.

Brian officially got to get rid of his sling today and as long as PT continues as is, he will be back to full duty early May!! And since I haven't been well enough to get back to work yet, that will be nice. You know what they say about the best laid plans......

Tuesday, April 3, 2012

Days like these....

Oh, how I love them.  The weather is cooler, almost colder than most of our 'winter',  Ethan is on Spring Break this week, so he and I slept in til 11am-oops didn't mean to-and now I am updating here while he lays beside me on the bed watching "Happy Feet 2" on my Kindle laughing hysterically!  I love it when he laughs at something appropriately!  Like Saturday when Hailey and I took 4 boxes of glass bottles to the recycling bin and as she dropped each box into the already huge pile of glass, he squealed at the crazy, crashing loud noise it made! 

Speaking of the little bald guy-he turned 8 on Friday March 30th-and we celebrated Circus style.  Sorry, Camryn-ribs aren't usually circus food!  Hots dogs and nachos.  Cotton candy and popcorn.  Licorice and candy.  Punch balloons and elephants  wait scratch the elephants-not in the budget this year!  AND I was informed this is the last year for a 'baby' themed birthday party for him.  Try and stop me honey, just try.....
3 layer fondant cake courtesy Emily Bowers!  It was so yummy thanks!!!

when you have a peanut allergy kid-orange candy ones are the next best thing!

Ready for Disney!

Aweseome cool light-up toys I found in the $1 spot at Target!

Had to post two pics of the kids to get everyone looking forward!  Ella what are you doing to Parker?

Kristin checking out E's new bean bag!

So the party was a huge success thanks to all my family and friends who helped me decorate, set up, blow up balloons-we used the air compressor-and then stay and take it all down and clean up!  I was very grateful for the last part especially because I hadn't gotten my nap that day, and I was beat!

I had my Neulasta shot last Monday, it is the white blood cell booster shot I will get after each chemo treatment.  Not too bad, and thank goodness I didn't get hardly any of the side effects that can come with it-which are terrible bone pain in the low back, hips and thighs and sternum.  I took my prescribed regimen of Claritin and Ibuprofen and I think it really helped.  I had a couple days of twinging, heat-like pain in my right hip and leg, and some burning in my chest.  But because my heartburn is so bad, I'm not sure which pain was related to which treatment. 

Now for the fabulous news...........

My blood counts were amazing!  When Jennifer-my NP-came into the room she jokingly asked if I had even received any chemo the week before!  My white count was 8.9-yes higher than the day of treatment when it was 6!  My neutrophils were 3.5-higher than my treatment day of 2.8 also!  Like a good RN friend posted-I had Ninja cells!  Woo-hoo!  I had one crappy day where I slept pretty much all day-it was the day before Ethan's party, and I was kind of nervous I wouldn't make it through his party.  But I slept so good that night and made sure I slept in a little bit the next morning, I think it made all the difference. 
My hair is not coming out yet.  I have a little in the drain when I shower, and it feels a little thinner than normal-but no clumps! 
I half jokingly said to Brian last night that I hope Robert Courtney wasn't the Pharmacist mixing up my chemo drugs or I'm in trouble. 
*all joking aside, for those of you who don't know who that d-bag is, he was a KC Pharm who diluted chemo meds for patients in the name of making more money-and I firmly believe he will rot in hell for what he did to those people and their families. 
But it does make me kind of nervous that I 'm not getting any of the 'normal' side effects.  Not that I WANT any of them.  But what if it's not working? What if the dose IS wrong?  Ugh, I could make myself crazy thinking about it-so I just don't.  But back to Rawley's Law-if it can go wrong......

Anyhoo-big news on the horizon-I get to go back to work!!  Not my full hours, but 24 a week for now!  I am going to plan on working Monday and Friday nights!  I am hoping to start next week, so we will see how that works out.  I miss my work, and my co-workers!  And they keep telling me that the only way to beat fatigue is to stay busy, so here goes!!!  As long as my counts stay up I will be ok, but if they should drop, we will have to re-evaluate.  I am thankful to have such an awesome department willing to work with me! 

Brian is looking forward to maybe getting out of his sling the end of next week!  His PT says he is improving on his range of motion by about 14% after each weekly session.  If his sling comes off next week, they will start working on strength training until mid-May.  Then he could possibly go back to full duty (and off-duty) then!  We will need it, cause even though I can go back, this week will be the last paycheck I get.  All my donated PTO will be gone, and the only hours I will have on each check will be those I work.  We'll make it-we always do.  On a wing and a prayer and a lot of help from our friends and family!  Speaking of family, my Aunt Mici is coming in town tomorrow to stay for a week with us!  It will be so good to have her here!  I can't wait!  So she and my Mom are going with me to Chemo this week, hope they have room for us again!  I have to be there at 8:15am-seriously?  Don't they know I'm a night owl???  Oh well, I will just take my Ativan and take a little nap, by the time I'm done it will be lunch time!  And maybe time for a little trip to Good Ju Ju's new store and Bella Patina ......

One more thing-my kids made me the most wonderful gift-a Quillow!  It's a quilt that folds up into a pillow for me to take to my chemo treatments and they made it all themselves!  Teresa-my Dad's wife-her parents were in town a week ago, and Janet-her Mother- is an amazing seamstress.  Well, she helped them do it, but said Parker was fabulous with the sewing machine; sewing and talking and pulling pins all at the same time!  Better than Hailey!  Janet volunteers with incarcerated women in Iowa-just one of the MANY places they volunteer- and they make these Quillows for the women at Hope Lodge, a place much the Ronald McDonald houses who provide a place for cancer patients to stay while receiving treatment.  I am making the lodge one of my pink ribbon wreaths in exchange for her making me some head scarfs! 

Don't my kids do great work?? I think I've fostered Parker's creative skills quite well?!!?!!?