Sunday, August 29, 2010

Reality Check

They say that this whole cancer thing is going to give you wonderful new views on life, you learn to appreciate every moment and you truly stop sweating the small stuff. And generally I would go along with all of it. Well, tonight I say BALONEY!  After a pretty normal weekend of swimming, farmer marketing, and playing with friends, the kids have totally pushed me over the edge.  I am pretty certain I screamed to Nick tonight "they are mocking me!!!"  To which he calmly said "Jenny-Jane isn't even two, I promise, she is not mocking you."  Oh, she was, and that other one was too.  Their dinner at the little red table was a fiasco of defiance, the "flashlight walk" after dinner was good idea gone bad and I'm certain bedtime will be on a upcoming episode of "Cops" with the theme song Bad Mom, Bad Mom, What-Ya Gonna Do When They Whine for You.  Jenny-Jane is still calling my name from her crib at 9:45pm as I write this and Fisher called Daddy into his room distraught about my attitude.  Mine???  Who put expresso in their sippy cups??


Deep breath.  


So, to all my sweet friends and family who often say "you are handling this all so well,"  "you are so strong," and my favorite "how do you keep it together when everything around you is falling apart?", I say, here you go.  Here's proof of my many moments of insanity. While we are really trying hard to just get through this ugly episode in our lives, I can tell you that it's far from easy.  Kinda the opposite of easy.  


Oh, don't worry.  We'll make it, of course we will.  Just thought it was time for a reality check.


With love and without patience,
k



Wednesday, August 25, 2010

Of Bugs and Boobs

I was all set to give you an update of my first visit with the radiologist, but that darn kid (Fisher) trumped my story again. Just like on my first chemo day, when he shoved his arm through a window and had to be rushed to Children's Hospital for stitches, his story is again more interesting.  

So, late Sunday night Fisher woke us up crying that his ear hurt.  He never wakes us up, so we knew something was definitely wrong, but I gave him some ibuprofen and he went back to sleep.  The next morning we thought it best to run him to the pediatrician to have the ear checked.  Well, sweet Dr. Padrez tried and tried to remove what he thought was wax from Fisher's right ear to no avail.  So he called in the nurse with the Water Pic to flush the ear out.  Poor kid, the water pressure hurt like hell and the noise of the machine scared him to pieces.  He was screaming, crying and kicking for it to stop.  I literally had to hold his head still while she worked.  Finally on our last try, a hunk of something came out.  I was like "is that wax?"  "Umm... no" says the nurse and picks up what turned out to be a water-logged insect with wings and eyes and everything!!!  The kid had a half inch bug in his ear!!  I felt so bad for him.

So I asked Fisher his version of how that bug got there, and he says this, and I quote "A bug thought my ear was a cave. He put his front two feet in, and then his back feet and went inside.  He took a tiny flashlight out of his pocket to look around.  Then a big wave came and drown him."  Awesome.  The bug is still in a cup on his dresser.

Ok, back to my boring radiologist appointment.  Dr. Brachman, his PA Mr. Lee and cool Nurse Julie met with us for nearly three hours. Nick and I were really impressed at how much information Dr. Wendt, my oncologist gave them, and how much time they must have spent memorizing it.  Like, I barely remember my colonoscopy of 2003, but they knew all about it.  And sweet Mr. Lee immediately said "we are so sorry to hear about your Dad" the minute he walked in the room. Good sign.

Treatment is pretty much exactly what we expected.  Six and a half weeks of radiation every day, Monday-Friday starting on Wednesday September 8th.  Appointments will be quick, about a half hour each. I see them again this Wednesday for my two hour "simulation" which will map out exactly where the lasers will be aimed.  Every person's radiation is different and that's why Dr. Brachman has such a big brain.  It's beyond scientific how he calculates how to shoot me with radiation from this HUGE machine that completely rotates around my prone body.  Totally wild.  I also get tiny tattoos (my first) on my chest to tell the radiation techs where to aim each week.  

The doctors explained that radiation is super powerful and will kill any remaining cancer cells where the tumors started, as well as in lymph nodes near my collar bone.  This would be the next stop for any bad cells after going to the lymph nodes under my arm, which were removed during surgery.  He said they do chemotherapy first to kill any cancer cells that may have escaped into my body, then radiation afterward to make sure it never starts up again in the same spot. Sounds logical.  I'm to expect fatigue and a sunburn.  Fine.  Let's get it done.

I guess the only disappointment of the day was the news that I have to stop filling the expanders in my chest.  I was hoping to sneak in a few more fills before radiation starts, but my dream of the DD is gone.  Dr. Brachman was pretty adamant about it.  The skin where my new boobs will eventually go is super duper stretched and is getting thin- yuck.  Plus the expanders are pushing on my ribs, making them kind of bend, oops. He literally needs a straight shot with the big radiation lasers and I'm pushing it. He said because of my thin frame and small boob size to start, the B cup I'm at is my limit.  Crap.  My Mom agrees with the doctor.  Traitor.  Just kidding, Mom.

Sorry this got so long, but I had to tell both stories.  I know, Fisher's was better.  Let's see what he has in store for my first day of radiation.  He's quite a little bugger- ha ha.

love,
k

Monday, August 23, 2010

Komen Race For A Cure 2010

Cutest cookie made by my sister Diane


(This is an email I sent out tonight, but I'm sure I missed many people, so I'm posting it here too)

I hope you will consider joining our team for the 2010 Susan G. Komen Race for a Cure on Sunday, October 10th in Phoenix.  That's 10/10/2010!

Nick and I have been shocked at the number of women we know, especially young women, battling breast cancer. Personally, I know ten women, including me, fighting this disease.  One of these women, Pat Mersiowsky, is a sweet friend and sorority sister of mine from University of Arizona. Pat is married to an amazing man named Andy, who happens to be a UofA fraternity brother of Nick's.  Is that wild or what?  Pat and Andy live in Phoenix and have a gorgeous brood of four young kids. Pat has been keeping a blog of her experiences since diagnosis, www.caringbridge.org/visit/patmersiowsky  I think you will fall in love with Pat and her family as they are genuinely, wonderful people.

Our sorority sister, Marcy Mills Labahn, has organized a team for the Komen Race for Pat and me.  We hope to raise money for cancer education, screening, treatment and research.  Marcy is also arranging a get-together Saturday night before the race and team t-shirts.  She set a fund raising goal of $3500, but I'm sure we'll raise more.  Please don't feel like you need to hit up your friends for donations, just your $30 registration fee would be a great contribution.  And, if you are out of town and can't participate, you can also make a small donation to our team in your absence.  




Please register under the team name ‘Oh Pat and Kiki.’ (The team name is a play on a Kappa Kappa Gamma rush song.) The key is participation - there is no additional fundraising required. We look forward to getting as many people out there as possible on October 10th.
For those of you on Facebook, Marcy has set-up a Facebook page:  http://www.facebook.com/pages/Oh-Pat-and-Kiki-Phoenix-Komen-Race-2010/118699224844649?ref=sgm
If you’d like to contact Marcy directly, feel free to email her at:  millsmarcy@yahoo.com
As the event draws closer, we will be back in touch to inform of Saturday night's festivities and Sunday morning's (race day) meeting place.  
Thank you in advance for your love and support.  
As always,
-kristin

Saturday, August 21, 2010

What A Difference A Year Makes

My three favorite guys- Nick, Fisher and my Dad (taken 8/2009)

This evening I was looking at the photos from our last Hower family trip back home to Milwaukee in August of 2009.  The photo to the left was taken down on Beach Drive along Lake Michigan near my family's house.  On this trip home my Dad climbed down with us to the beach, walked with Fisher on the railroad tracks, searched with us in the backyard "forest" for sticks to burn in the fire pit and even took Fisher and me to the local firehouse to squirt hoses (he was a volunteer firefighter in his day).  That was almost exactly one year ago from today, and eight months before my diagnosis.  How can life change so quickly?  


In light of the news of my Father's passing, the milestone of my last chemo seems fairly uneventful, but I know it's truly a big deal and deserves celebration.  My 8th and last infusion was this past Wednesday and I am officially done. DONE.  Yay Yay!  That also means that my Taxol symptoms started up last night and I've been feeling pretty cruddy.  I'm up and around, but I'm far from pleasant (just ask my family).  It's the same old bone/joint pain I've had before, so I know it only lasts a few days.  I'm also on antibiotics for five days just as a precaution to prevent any fevers or infections from flaring up.  I know it sounds petty, but one of my antibiotics that I take twice a day is a huge horse pill and is constantly getting stuck in my throat.  I know everyone's felt that annoying sensation before- it's the worst!


Monday I meet with my radiologist for the first time to discuss my new treatment.  I expect to be told that I'll have six and a half weeks of radiation every day (five days a week).  It may cause fatigue and a sunburn feel on the right side of my chest where they radiate me, but this sounds pretty tolerable.  I do know that I've made it through surgery and chemo- and that is pretty darn huge.  What's left after radiation?  Just my implant surgery next fall, so by this time next year it will be all over.  Now that's a life change I welcome with open arms.


love
k

Thursday, August 19, 2010

My Dad (Part 2)

I'm finally ready to say a little more about losing my Dad last Wednesday.  This subject is so deeply personal and I am still trying to comprehend the level of grief I am feeling, so this is really hard.  I think I will defer to a quote from my brother Mike's eulogy:


"My Dad was loved deeply and respected immensely.  He and my Mom raised a family of five children and eight grandchildren.  We all knew we were loved every day of our lives.


I'm certain that raising five children wasn't easy, and I'm pretty sure that we gave him his share of grey hairs.  But no matter the trouble we caused, big or small, we always knew we could come home.  


And that's what we did during Dad's final days, we all came home. With my Mom, brother and three sisters around him, we reminded Dad of all the lessons that he taught us, the experiences we shared and the love we have for him.  He will always be in our hearts."


I absolutely cherish the ten days I spent at home in Milwaukee before and after my Father's death.  I am so grateful that I was at a point in my breast cancer treatment that I could travel safely and be completely present to this incredibly powerful experience.  Being surrounded by my entire immediate family infused me with a new sense of wholeness and strength.  I think my Dad knew what I truly needed to continue my fight and he gave me this final gift.  I'm in awe.


With great love, 
k



Sunday, August 15, 2010

My Dad

Howard B. Knotek
February 12, 1931 - August 11, 2010


Friday, August 6, 2010

Family Weekend

Nick, Dyan, Wendy, Kristin, Emma, Fisher & Jenny-Jane- Out to Dinner
Wendy and Nick- Silly Siblings
Kristin, Jenny-Jane and Emma- Sticker Crazy
Dylan, Emma & Fisher- Tower of Cousins
Jenny-Jane and Emma- Swimming Cuties
Dylan and Fisher- Water Shooter Kings
Ben, Fisher, Emma w/Felix, Jenny-Jane & Ryan- Movie Time
Nick, Fisher, Dylan, Troy & Emma- Diamondbacks Game

Ok, I admit, the photos are a bit excessive, but I couldn't help myself.  Can you believe the constant fun that was had this past weekend around here?  Most of our time was spent in the pool and the hot tub. It's amazing how much fun kids can have swimming. A few rafts, a diving board, water squirters, goggles, diving toys and sunscreen were all that was needed. The dryer was on continuously keeping towels dry and at the ready. Every lunch was family style on the back patio table and I just loved watching our little ones devour hot dogs and fruit after a wild morning swimming. It kind of gave me a glimpse of what having a couple more kids would be like. No, that's not an option for us anymore due to the chemotherapy, but cousins are a great substitute.


We did have a few outings too. First was Oreganos pizzeria for dinner one night where we all fit in a big booth and laughed like crazy as Jenny-Jane covered herself and Emma with stickers, Fisher asked the waitress three times what her name was (Sarah) and Dylan scorched his mouth on "medium hot" hot wings. Saturday the grown ups had a night out at Nick's and my all time favorite spot in the whole city, Pizzeria Bianco. The owners and staff treat us like royalty, especially now that I am bald. Hey, there are a few benefits to this whole cancer thing. Wendy presented us with gifts of handpicked lucite-bound 4-leaf clovers and a plastic jellyfish that Nick immediately plopped in his beer to scare the stone faced waitress.


Sunday eve the Carlo family joined us for yet more swimming and Nick's "fall-off-the-bone" ribs. Adding two more kids to the mix was a hoot. Hmmm... Now I'm thinking we could adopt four more, tee hee. While the kids watched movies late into the night, we six parents drank beers (me too!) and attempted to teach our guests the dominoes game Mexican Train. There is a slight concern that Wendy has a learning disability, who knew? On Monday, the Dads took the kids to a Diamondbacks baseball game where they all claimed to have the time of their lives.


Tuesday we said goodbye to the Livingston family and our house seemed sadly empty. Fisher sobbed and sobbed for "Dylan-Emma" Tuesday night when he realized that Dylan was no longer on the Aero bed on the floor of his room, and Emma was not tucked in next to him. I kind of felt like sobbing too. We have wonderful memories and photos of their visit and great motivation to get the gang together again soon.


Ok, back to real life of chemo recovery for me and work for Nick. As always, I'll continue filling you in on our little world.
With love,
K

Tuesday, August 3, 2010

Seven Down One To Go!!

Happy Tuesday!
This morning we said our teary goodbyes to the Livingston clan as we took them back to the airport after a long weekend of fun fun fun. I'm still collecting photos from cameras and iPhones so I want to wait to give you the full overview of our time together until I can show pictures of the highlights. Needless to say, the cousins had the time of their lives together and us parents enjoyed every second reconnecting. Having eight people in our home was a hoot and dull moments were in short supply. Thank goodness I was feeling really well the entire time and could participate in all the craziness. Our home seems sadly quiet, we miss and love you Livingstons!

So, while we wait for our weekend photos, I thought I'd give a quick chemo update. Yesterday was my second to last chemo infusion, yay yay super-yay!! Wendy was my loyal chemo buddy and it went pretty well. Before they start my IV, Dr. Wendt always asks a million questions ranging from "Are you spitting up blood or mucus?" to "Do you have pain or stinging while urinating?" Thank goodness my answers are always No! He also always checks my reflexes. This is one thing that has kind of freaked me out lately. When chemo started, my elbows and knees would would seriously fling when he hit me with that little rubber mallet. Last two appointments, they barely flinch. He said this "might" get better after chemo, maybe not. Yikes, I hate to be reminded of what the long term effects of these harsh drugs can be.

One bonus this week, I won't be needing my Neulasta white cell boosting shot today.  When Dr. Wendt  reviewed my blood counts yesterday, my white cell count was at 39,000!  Holy smokes, that's the highest we've seen so far.  I've been as low as 300 (which put me in the hospital for 4 days), and as high as 25,000, but this was an all time high.  Who knows why my counts are all over the board, but I get spared the bone pain that Neulasta causes this week, so I'm happy about that.

Wendy and I stocked up on Jamba juice, potato chips, Goldfish crackers, salted nut rolls (she never had one!!), Chunky bars, trashy magazines and all the other necessities for the 3- hour stint in the chemo chair. We also had "Hot Tub Time Machine" on the iPad. Sounds like we were gearing up for some white-trash trailer festival. Anyway, it all made the time pass quickly along with our constant chatter with the wonderful nurse Lyndsay.

Thank goodness I only have one infusion after this. My veins are getting pooped. I don't have a port for drug injections, we opted to use my veins to save two surgeries of installing and removing the port. But using veins can be kind of painful since the drugs are harsh and IV's in veins are just generally uncomfortable. Plus, they can only use the veins in my left arm since they removed most of the lymph nodes under my right arm. This is to prevent a miserable condition called lymphodema. Who knew?? About 2-3 weeks after my last chemo, I will start radiation every day for 6 weeks. I haven't met my radiologist for the full low-down yet, but expect to do so in the next week or so.

This morning I had another expander fill to stretch the skin on my chest for my breast implants. It's definitely uncomfortable for a couple days afterward, but tolerable. The feeling is super weird to walk out of the plastic surgeon office every week with a new sized chest! It's kinda like a science experiment. I'm happy to show (flash) anyone who asks- don't be shy!

I'm still feeling good, but know to take it easy. Dr. Wendt has prescribed for me to take antibiotics starting Thursday to ward off any fevers which I think is a great idea. Why not stop them before they start.

Oh, and save the date of October 10th for the Phoenix Komen Walk for a Cure for Breast Cancer. My friend Marcy has it all organized. More on that to come. And I'll be posting again soon with photos and stories of our great family weekend.

I send my love to you all. Thank you for caring enough to read all my blog posts!
K