Today was my sixth full brain radiation treatment (FBRT) and I’m feeling the effects.  I’m tired, a little foggy, nauseous and have a terrible taste in my mouth.  I have about 11 more treatments to go.  When I’m finished with my 11th treatments, it will be another two months before they know exactly how the tumors responded to the radiation.  The daily radiation I receive doesn’t mean it’s immediately killing the bad cells.  It takes time to show the response.  It’s such a scary thing. 

Last night was hard for me because I realized I could lose brain function from the radiation.  I know I’m not a genius, but I would like to think I’m fairly intelligent and the thought is scary.  I’m also not ready to lose my hair again.  Dr. Edlund said it will come out by the end of my second treatment week (the end of this week).  I thought the days of headscarves, wigs and hats were behind me.  Never say never, right?  Brooklyn prays every night that “mommy doesn’t loose her beautiful hair”.  I just tell her I’m the same person with a whole new look.  I think that’s the toughest part for her.  What six-year-old wants to see their mom without hair….again?! 

Everything is taken care of at home.  Max and Samantha are based out of my parent’s house during the week while Dusty’s working.  Brooklyn stays home with me if she doesn’t have anything on her social calendar for the day. 

Last Saturday I had to talk to Brooklyn about dialing 911.  Since I have six tumors I have a risk for a seizure.  It’s possible that she’ll be home alone with me if I happen to have one.  So I explained that if I start to shake and don’t respond to her that she needs to pick up with the phone and dial 911.  She had typical 6-year-old questions:

1.  Who is going to answer?  Will it be Anna and Riley’s daddy because he’s a police officer, you said?

2.  What do you I need to say?

3.  What if I can’t remember my address?

4.  What will they do to me?

5.  Will I go to jail? 

6.  What are they going to do to you?

Poor kid.  It seems like too much for her to have to know right now.  She’s a great kid, though and the odds are that she will not have to dial 911.  I just want her prepared. 

Thank you to everyone who signed up for the group For the Love of Lindy on Facebook.  http://www.facebook.com/home.php?#!/group.php?gid=141964462500093&ref=ts

Thank you to everyone who is signed up to participate in the Susan G Komen Race For The Cure on the Laps for Lindy team (see top right)

Please pray for:

My brain function to be protected from the effects of the radiation.

Radiation miraculously takes away all tumors. 

Dusty has been an amazing care taker for me and the kids.  The phone rang at 10:00 a.m. and when I said “hello?”  All I heard was (in a low voice) “take your pill”.  Too funny.  I totally would’ve forgot.  So thanks for those little reminders honey!  Please pray that he doesn’t grow tired of trying to “do it all”. 

Our kids.  They mean the world to us and I want to stay alive and raise them.  Please pray that the little ones will have little or no memory of this and Brooklyn will be able to roll with it.

THANK GOD for all the awesome people he has in our lives.  People who are fundraising for our family, supporting,  praying, visiting, messaging, sending cards, everything.  It means more than you know. 

Thank you Christy Pacanowski for taking our family pictures before my hair fell out again.  You go girl! 

There is no place like home. 

The last week has been incredible.  I can’t believe I’m walking around with brain tumors.  It’s a very scary thought.  I keep wondering when or if I’m going to have a seizure.  What will it be like?  Will I be alone when I have it?  Will Brooklyn see it and will it will scare her?  What do I do if I have one? 

It was so good to see my kids today.  My parents kept the babies for one more night – I am exhausted – and Brooklyn is home with us.  We had a good time tonight.  She wanted to celebrate August so we did arts and crafts to celebrate August.  Why not, right?

Dusty and I voted today (go Bill!) and yes, I got a sticker.  I’m wearing it proudly. 

My main side effect from radiation is EXTREME EXHAUSTION.  I’m not nearly as sick as I was with chemo (PRAISE GOD!).  I just sleep or want to sleep a lot.  I also have a lot of jaw pain and swelling.  My lymph nodes under my ear lobes are swollen, hard and sore.  It’s very uncomfortable.  Thankfully I see Dr. Edlund (radiation oncologist) tomorrow so he can tell me if that’s a normal side effect. 

I don’t have my permanent schedule for radiation so that’s why I haven’t posted a driving schedule.  Hopefully I will know more tomorrow.  Thank you to everyone who has offered to drive me. 

Please pray for:

• The tumors to miraculously disappear. 
• Continued smooth transition into home (away from the comfort of being at the hospital).
• A positive reaction to the radiation.
• Few side effects from the radiation (or at least that they don’t get worse – I can deal with this). 
• Dusty and the kids.  My heart aches for Dusty as he, once again, has to go back into cancer mode less than a year later.  He’s doing awesome and is great with the kids, but this is not what we expected. 
• Our parents.  Please pray for strength, support and encouragement for them.  
• Max and Samantha are still too young to get what’s going on.  They were having so much fun with my parents today which was a huge relief to see.  Running around and laughing.  The best sounds on earth. 

One simple goal listed on the whiteboard in my hosptal room – “Stay Alive”

They are keeping me one more night at Spectrum downtown (Butterworth).  I’ve been having strange tingling in my right foot and my right leg feels strange.  They thought it would be best to keep me here to keep my headpain under control.  I start radiation tomorrow and will have it for about two weeks.  It will be full brain radiation.  This means I will loose my hair again, be tired, get nauseas and all the fun things that go along with radiation.   As of this morning, it’s still not clear as to whether it will be here in Grand Rapids or if I can do it in Holland. 

Dr. VanderWoude was able to speak with a doctor at Mayo Clinic yesterday.  He said they just trained two of their best guys for Spectrum so there is no need for me to get the radiation done there.  They will, however, want to see me in about six to eight weeks to see how I responded to the full brain radiation.  We may proceed differently from that point on.  So it won’t be until mid to late September that I’ll go to Mayo Clinic. 

I’m going to have a HUGE adjustment because until they know how I’ll respond to radiation they advised me not to drive.  I’m at risk of having seizures because of the location of the tumors.  So to keep me, my family and other people safe on the road I will not be driving.  However, this becomes a logistical problem for getting to and from radiation treatments, doctor’s appointments, running errands, etc. 

I will have a driving sign up list on my blog once I have my appointments figured out.  If you are willing to drive me around, please go to the list and sign up.  Thank you!

Dusty went home this afternoon to spend some time with the kids and take Brooklyn to church tonight.  I think some of the service will be a prayer time for me and my family.  I’m humbled, honored and so happy for this.  I know that prayer works and the more prayers, the better.  I think God has heard my name a lot lately.  So if you want to join your brothers and sisters in Christ at Haven they would love to have you.  It’s in Zeeland on Alice street – www.havenchurch.org.  Jill is coming here with her laptop so we plan on tuning into the service via the internet.  Thank God for technology!

My brother and Jill have started the Laps for Lindy team again for the Susan G Komen Race For The Cure.  If you want to participate by running, walking or crawling, please go to http://race.komengr.org/site/TR/Race/General?team_id=4800&pg=team&fr_id=1040 For more information about the team.  To see the general website or sign up to participate or donate is: http://race.komengr.org/site/TR?pg=entry&fr_id=1040&cvridirect=true

Also, a great friend of mine from highschool, Kara VandenBerg has started For the Love of Lindy Facebook page.  You can join it or check it out here:

http://www.facebook.com/group.php?gid=141964462500093&ref=search

Thank you for the incredible outpouring of love.  We’ve had so many people come here and pray with us.  I was even annointed with oil last night.  That was amazing.  Thank you to all of our family and friends.  You mean so much to me. God bless you. 

Spring is here.  In more ways than one.  Those of you who’ve experienced a “winter” in your lives know what I mean when I say SPRING IS HERE! 

I’ll get the health stuff out of the way first: 

I had my blood rechecked on Monday and everything looks good!  Praise God.  My hemoglobin was 12-point-something and my electrolytes are normal.  That is a huge relief yet a little frustrating because I’m still pretty tired.  My energy level is not where I want it to be.  I liked it when I could blame my lack of energy on my anemia.  Hopefully I’ll be back to normal soon because I envision a lot of walks, bike rides and fun activities with the kids this summer. 

I’m returning to physical therapy tomorrow because I’m losing a little mobility on my right side.  It’s painful to lift my right arm all the way up.  As a matter of fact, I can get it to a certain point and it won’t go any higher.  Very strange feeling, but I think with the proper therapy I’ll be back to normal again.

Even though I promised myself I wouldn’t think about reconstruction and enjoy the summer, my mind has been drifting towards August when I have the reconstructive surgery scheduled (August 10) at the University of Chicago with Dr. Song.  I’m second guessing my decision (the procedure, the surgeon, the facility, etc).  I guess that’s normal, because it’s a big deal, but I just want what is best for me and my family.   

Max and Samantha are now 18 months old and they keep me running.  They are everywhere and into everything.  It’s been fun to watch their personalities develop.  Max is a chill little dude and Samantha is very strong willed and knows what she wants when she wants it.  They crack us up with the faces they pull, little smiles and ways of talking. 

Brooklyn is nearing the end of her kindergarten year.  She recently learned how to ride a two-wheeler and we bought her a new bike.  She’s so excited for “sprinkler weather”. 

Dusty is doing great.  He has a new assignment at work that is keeping him on his toes, but he seems to be enjoying it. 

For your viewing pleasure: 

Dusty, Samantha and Brooklyn going to Frederick Meijer Gardens

Max enjoying the first nice day of the year:

Samantha loves climbing and is always on the move

Brooklyn and her friend Avery playing in the creek behind our house

Samantha and Max inspecting the lion

Brooke and Avery at the GR Museum