As of 3:45 today Spring Break has officially begun!  Yahooooooooo.  We’re not going away this year because we have too much going on, but it’ll be fun nonetheless.

I’m putting a post out because I’ve been having a rough time getting off the steroid.  If you have a moment to pray today, could you put one up there for me?  I will take my last dose of the steroid on Friday.  Tapering off has been brutal and I’ve had every side effect possible.  You name, I’ve had it.   Nausea, vomitting, migraines (they put my on a new migraine med and it’s helped tremendously – PTL), fatigue, muscle aches/pains, the blahs, etc.  The NP at Dr. Schott’s office said they will go away in about a month and I just need to press on.  So press on I shall.  In the meantime, it’s gonna suck, but I’ll be fine.  I’ll be fine….I say that a lot lately. 

Oh great God be small enough to hear me now. 

I wish you all a wonderful Spring Break with your families no matter where you spend it.  Be safe, Be kind, Be a blessing. 

Oh how things have changed in the past two years.  Brooklyn was five when I was first diagnosed.  I remember telling her that I have cancer and her response was something like “Oh no.  Can I watch a movie now?”

Saturday night Dusty and I were in the living room watching TV.  The kids had been in a bed for well over an hour, Brooklyn must have had trouble getting to sleep.  She walked in the living room with tears rolling down her cheeks and in a very small voice she asks “Mom…what if the cancer wins?” (more tears and a few sobs).  Wow.  She’s seven now and has come along way since five.  She asked me a similar question when she was five and I said that I will get to go to heaven if the cancer wins.  Her response at that time was that I’ll finally know what Jesus and God look like. 

I sat there for a while not knowing which answer to go with.  We’ve always tried to be as honest as possible with her.  Should I be honest again and say I’ll die?  This is clearly not the time to talk about mom dying.  This poor child is scared out of her mind.  She goes on to say “I need a mom”.  That sound you may have heard rumble throughout the town was my heart breaking.  The only thing I could say was that I want to be her mom and I’m going to fight the cancer with everything I have.  I told her the doctors say the disease is stable and I’m doing as good as I can be with my diagnosis.  We need to keep praying and trust that God will heal me.  She understands that my cancer is from satan and not God.  That God loves us.  Such a difficult subject to talk about with a seven year old. 

It’s amazing who cancer affects and in how many different ways.  Poor kid.  No seven year old should have to deal with the thoughts that she has.  She also sobbed that “daddy will never get married again!” I told her that if I’m not here anymore, daddy could get married again and that I’m okay with it (as long as she’s perfect). 

As far as my health, I’ve been tapering off the Prednisone and it’s not going very well.  I am going to press on and get off the steroids because I need to.  However, I’ve had migraines nearly every day (I think that’s what scares Brooklyn) and my fatigue is getting slightly worse. No fun. 

Our house is moving along well.  Everyone has been working hard on it. 

Please Pray: 

• Please pray for Brooklyn as she stumbles through the web of cancer. 
• Pray that we, as her parents, will know what to say. 
• Pray that my adrenal gland kicks into full gear.
• Pray for my Cancer Club friends in their different stages of the disease.
• Praise for my family and friends who help our family in many ways. 

Tomorrow is my MRI day at U of M.  I’m nervous, anxious and partly excited.  Nervous and anxious about everything surrounding the MRI.  The IV poke to get the contrast in.  Sitting in a tube for 30 minutes with robotic noises blaring in my ears.  The results of the MRI (I won’t have the results until next week).  The list goes on.  I don’t even like walking through the doors at the cancer center.  Don’t get me wrong, I love U of M but not the feeling I get walking in there.  I see so many sick people at varying degrees of illness.  It’s hard.

I’m excited because Jill is coming with me and we’re going to IKEA first.  I love walking around IKEA.  What I love more is having Jill with me.  She’ll keep me upbeat.  She always does.

I had a great time with my Cancer Club girls last Saturday.  We met at JP’s.  It was great to see everyone and wonderful to have Lisa Vander Zwaag there for the first time.  She’s another brave soul who is around my age and battling this nastiness.  She doesn’t keep a blog so I can’t refer you to one, but please pray for her.  This is a picture of our cancer club.  From left to right is Kristi Rogalske, Lisa Vander Zwaag, me, Lynette Bell, Heather DeBoer, Amy Harper and Robin Maxson. 

Please pray that tomorrow’s appointment goes well and that the results are great. 

You know what sucks about my cancer?  I don’t know what to expect.  How many people do you know had breast cancer metastasize to their brain in the form of six tumors.  Undergo whole brain radiation and a couple weeks later endure Gamma Knife surgery.  If you do know someone, do they have a seven year old and two year old twins?  I don’t know anyone.  So it’s really hard to know what to expect.  I can’t bounce questions off people.  I have to take things as they come not knowing how long it will last.  Just when I think I’m getting better (last week), I’m wrong.  This week has been a little rougher with headaches, bouts of nausea and fatigue.  It’s frustrating to say the least.  Cancer sucks.

I think I’ve mentioned the Cancer Club in past blogs.  We’re a group of young moms who’re battling this demon and I beg of you to pray for Kristi Rogalske (a link to her blog is on the left rail).  She and her husband have made the difficult decision to stop chemo and they had their first meeting with Hospice yesterday.  Please pray that the peace she feels continues.  I’ve just been getting to know her and she is a wonderful woman, wife and mother.  This is really hard for me to think about. 

The big news in our house is that we’ve decided to move.  We’ve wanted to move before the cancer returned and now that things are calmer and more scheduled, we have decided to move.  We’re not moving anywhere exotic.  We’re staying in Zeeland.  So if you need a house on Paw Paw Drive (the street so nice they named it twice) there is a great one for sale.

Learn More – View Listing

Learn More – View Listing

Things are going reasonably well.  All side effects (fatigue, nausea, headaches, lymphedema, etc) are not as frequent or as bad and I’ve had quite a few decent days!  Praise God.   So much so, that I’ve had Max and Samantha home with me much more recently.  They are so much fun!  Naughty, but fun.  They got into the pantry the other day and played “eat”.

The blizzard was awesome.  Brooklyn was so excited that school was cancelled.  We had a great couple days off.  On Wednesday Brooklyn made a Blizzard Celebration Cake. 

On Thursday, my dad came with his John Deere tractor to plow our driveway.  Max LOVES Papa’s tractor. 

Dad created a huge “snow mountain” for the kids to climb on.  Brooklyn loves it. 

Brooklyn was bummed she had school again today.  I think I saw tears roll down her cheeks this morning.  Life is tough when you’re a first grader.  🙂

My next MRI is scheduled for February 24.  I return again the following week, March 1 (happy birthday mom!) for the results and another check up with Dr. Schott. 

Please pray for:

• Health in our family.  I’m fighting a terrible sore throat. 
• Peace for my family and friends.
• Endurance
• Faith not Fear
• My cancer to go away completely.
• A cure.

Happy Birthday to me!  Happy Birthday to me.  The best present was yesterday.  Being told by Dr. Schott that I had a good physical exam and my lab work looks great.  I played brain tumor olympics with Dr. Schott again and if they handed out medals, I would’ve received a gold one.  As for my lab work, all my tumor markers are within the normal range!  I’m slightly anemic and my adrenal gland is being a bugger so that explains my great fatigue.  She adjusted my dose of the steroid to 5 mg a day so hopefully that will make me feel better. 

Dr. Schott, Dusty and I have decided to still hold off on other therapy at this point.  She had really good reasons – Xeloda (chemo pill) is very toxic.  Another reason is that I continue to be stable with no recurrence of cancer elsewhere in my body.  She also explained I’m not a good candidate for any of the clinical trials at this point.  They have a trial for patients with brain mets whose disease is progressing.   I praise God I’m not eligible for that trial!  Mine isn’t progressing. 

I follow up with her again in six weeks with an MRI and more lab work. 

Dusty and I had a fun day.  Before the appointment we went to IKEA.  A little retail therapy helped with the anxiety and nervousness of the appointment.  It was fun.  The drive home became a little treacherous, but not too bad until the Zeeland exit.  We ate dinner at one of my favorite restaurants – Monelli’s.  YUM! 

Samantha in the snow…

I developed lymphedema on my back and part of my upper right arm because of the removal of my lymph nodes in November 2009.  The fluid doesn’t know where to go and starts to collect.  I went to physical therapy for this and she suggested I get a pump.  Thankfully our insurance covered this pump and I now get to wear it every day for one hour. 

It comes in three pieces.  One for my leg, one for my trunk and one for my arm.  They attach to eachother and have hoses coming out of them going into a machine.  The machine pumps air into the suit to push the fluid around to lymph nodes that I do have.  It works really well!  After one hour the fluid has gone down quite a bit. 

The twins are scared of it.  Samantha cries and says “mama off, mama off”.  It makes Brooklyn cry because I have to wear it laying down and I have restricted movement and it just looks kind of scary.  Max gets annoyed because mama’s not playing with him for a while.   I must admit, it’s not very becoming.  (excuse the messy house) 

Dusty and I are going to U of M on Thursday.  I’m always anxious when these weeks come.  I just pray that everything turns out okay. 

I’ve been tapering off my steroid and I can tell my adrenal gland is being lazy to start working again.  Please pray that I can continue to taper off and my body will start to work like it’s supposed to. 

Thank you for your wonderful emails and cards. 

Happy New Year!  See ya later 2010….hello 2011!  A year ago I was so happy to put 2009 behind us and now I’m equally as happy to put 2010 in the history books.  Just when you think your life will be smooth sailing…

We had a great Christmas.  Brooklyn was so excited for her presents this year.  Max and Samantha were happy to rip the paper and see what’s inside.  They got many fun presents.  It was nice to see our families again too.

Last week Monday we went to Great Wolf Lodge with two other families.  It was a riot. 

At first I wasn’t going to participate in any of the water activities.  First of all, I didn’t have a swim suit and second, what was I supposed to wear on my head?  Jill talked me into getting a mastectomy suit (Lands End has great ones) and when I brought up my head or lack of hair, she said “don’t worry Jill and I have that covered” (I have two friends whose names are Jill).  They bought me and themselves retro style, flowered swim caps.  Jill B was wearing black.  Jill G was wearing hot pink and I wore blue.  It was so funny.  People at the waterpark loved them.  We got a lot of attention!

There’s a slide at the park that three people can ride down together.  The Jill’s and I climb the stairs to the top.  Wait in line and finally it’s our turn.  There we stood.  Ready to gracefully maneuver our way onto the three seater tube.  The boy attendant working the slide turns to us, looks us up and down and says “there is a 500 lb weight limit”.  We were shocked.  Is that a fat joke?  Are you talking to us?  I think all three of us had our jaws on the ground.  Jill B broke the silence by saying to us “Get in!”  We plopped ourselves into that tube so fast and laughed the entire way down the slide.  Who does that boy think he is?!  500 lbs my foot. 

Overall, I feel better than a did a couple months ago.  I’m not back to my old self yet and I can’t wait for that to happen.  The hardest question for me to answer is “how are you feeling?”.  I can answer it by telling you how I feel at that moment, but it fluctuates daily and sometimes hourly.  It’s really tough to make plans or appointments because I feel bad cancelling and I don’t want to cancel because that means cancer is winning.  I won’t let it win. 

I’m still taking Prednisone, but I’m tapering off it.  Hoping my adrenal gland won’t be sluggish and will kick in. 

Thank you for your Christmas cards this year.  It is so fun to see everyone’s family pictures. 

I am going to see Dr. Schott at U of M next week for a routine check up.  Please pray we don’t find any lumps or bumps and that my lab work looks good. 

Thank you for your prayers and I ask that you continue to pray for:

• My cancer to disappear completely and forever.
• Brooklyn, Max and Samantha as they deal with having a sick mom.
• Dusty being superdad.  He’s been on this rollercoaster with me and although he doesn’t physically feel what I feel, he has to carry quite a load.
• Everyone who battles and suffers from an incurable disease.  We need endurance, strength, positivity and love.