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Our young family battling stage IV breast cancer one day at a time
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Back to Reality

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 Thank you for making Dusty’s 36th birthday extra special this year. 

Dusty Birthday 2010

From decorating his desk at work and posting his little kid picture all over Herman Miller (including bathroom stalls), to making an awesome cake (thank you Joni Gibson), money for dinner, 50 cards, treats, balloons, beer “with roots”, barbie and smurf cakes, 70+ Facebook messages, etc.  He was even gifted a special Eames birthday throne (thank you Brian Van Kley). 

He had a perfect day.  Thank you all!

 Max Eats Cake Sept 2010

This week we’re going to Mayo in Rochester, MN.  Thank you to everyone for your advice and help on getting there.  Thank you to the people who are staying at the house taking care of the kids while we’re gone. 

I wish I could say I were excited and hopeful about the trip, but my guard is up so I’m scared, nervous, worried and anxious.  I hate feeling this way.  I want good news. 

This is also Brooklyn’s first week of school.  New school, new grade, all day.  It’s a big deal and I’m not going to be here for it.  You can probably imagine the guilt. 

Please pray for:

  • God to go before us and set the path for all we do  – Mayo, work, first day of school, etc.
  • Safe travel to and from Mayo
  • Good treatment options offered to me from the doctors at Mayo.
  • Good first week of school for Brooklyn.
  • Safety for the Samantha, Max and Brooklyn as they spend time with family and friends. 

It’s all about Dusty

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Dusty is not your typical adult when it comes to birthdays.  Oh no.  He doesn’t pretend it’s not coming.  He doesn’t dread turning another year older.  He doesn’t deny that it’s his day.  He LOVES his birthday.  He looks forward to it.  He reminds me weeks in advance when his birthday is coming.  If he receives a birthday card in the mail before his birthday, he will save it to open on his birthday.  He loves his birthday. 

Dusty’s big day is this week Saturday, September 4.  He is turning 36.  I’m writing this because I want to make his day great.  If you see Dusty between now and then, please tell him a big Happy Birthday and give him a slap on the shoulder or a great big bear hug or something.

Thank you.

The Best Weekend Ever!

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I couldn’t have asked for a better weekend at the cottage.  Thank you Russ and Rhetha Genzink. 

Dusty and I had a great night by ourselves Friday night.  We went out for dinner to Hearth Stone.  We laughed later because we realized it’s a gas station restaurant.  That’s right, we celebrated our 12 year anniversary dining at a restaurant hooked to a BP gas station.  In all fairness, you wouldn’t know it was a gas station restaurant until you go down the hill and see the BP is hooked to it.  It was good food and we couldn’t complain. 

We were given a couple presents from friends to take along.  Knowing my enormous sweet tooth, my friend Jill smuggled a Zeeland Bakery Cake (white cake, chocolate frosting on top and cream in the middle – there is no other way) and fake bubbly (I can’t drink on my drugs).  Susan Bakker made an awesome appetizer platter for us. 

                                               

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Susan also made a cute little bucket of sparklers, rice krispie treats and fun things for the kids.  Brooklyn decided to try selling the Rice Krispie treats.  What a little entrepreneur!  Wonder where she gets that from? 

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We did everything we hoped to do.  We played in the water, went on a boat ride, rode the Sea Doos (Brooklyn’s new favorite), caught a fish, watched a sunset, roasted s’mores, ran around with sparklers, ate too much food and had a great time with the entire family. 

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It was so hard to leave on Sunday because it meant coming back to reality.  I am so thankful that for one weekend I could focus on something other than brain tumors. 

I watched my kids play in the water.  Discovered Brooklyn cannot go fast enough on a Sea Doo with her Uncle Clair.  Realized Max thinks he’s a big boy and wants to drive a Sea Doo too (just like Uncle Clair).  Samantha loves the water.  Brynn (my beautiful newborn niece) is such a sweet and awesome baby.  Although…word in the cottage was that she didn’t sleep well and gave her parents and grandparents a rough night.  Somehow my family slept through the whole thing! 

I’ll write a new posting to fill you in on what’s to come with me from a medical standpoint. 

I wanted this posting to be all awesomeness. 

Cottage Bound

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Thank you

to everyone who graciously offered their cottage to our family on short notice.  We were so honored by all the people willing to share the blessing of their vacation homes with us. Russ and Rhethea Genzink have kindly offered the use of their cottage on Upper Silver Lake.  I haven’t been to Silver Lake since I was a kid and am looking forward to seeing it again.  I also once had the honor of eating dinner at their cottage after my parent’s picked Kelli Huizenga and I up from Cran Hill Ranch.  I look forward to seeing if my memory from all those years ago still matches what it is.  I bet it’s even better.  I can’t wait to soak my toes in the lake, catch a sunset or sunrise (not sure what way the cottage faces) and watch my kids splash in the water.  Thank you Genzink’s!Lindy

Two Trains

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On Monday, July 26, 2010 I was on the platform of a train station boarding my train to the end of breast cancer.  I sat down on the nice commuter train, had a clean, comfortable seat and there was even some nice music playing overhead.  There was good lighting and everyone was in good moods.  I was on my way to meet with Dr. Song in Chicago for the last time before my procedure.  I had my best friend and our kids with us to make the most of the day at Shedd Aquarium.  I was excited about having reconstruction done by one of the best plastic surgeon’s in the field who was doing the best procedure for me.  We had everything lined up.  Our cousin’s sister graciously offered their Chicago basement apartment for Dusty to stay in while I was at the hospital.  We had childcare lined up for the six weeks following the procedure.   The train dropped us off the hospital.  I had a good meeting with the doctor.  I had a good meeting with the anesthesiology department and that was it.  I was looking forward to having my new, old body rebuilt – tummy tuck was the bonus!  One pesky thing kept creeping in during the day…headaches. 

Onward…we hopped the train to Shedd Aquarium and had a fabulous day.  The kids loved it.  We took in all the sites and made some great memories.  Drove home that night, tired, but happy we had such a fun, successful day.

On Tuesday, July 27 I went to physical therapy because I’ve been having problems with frozen shoulder since my mastectomy.  My PT also knew about my ongoing headaches and nausea and we assumed it was because of all the adjusting we were doing to my shoulder and neck area.  After PT I had such a bad headache that I called Dr. Hoberman (my surgeon) and she prescribed Norco (narcotic).  I took the pain pills, got through the day, but couldn’t seem to get rid of the headaches. 

On Wednesday, July 28 I began vomiting because the headaches were too severe.

On Thursday, July 29 I called Dr. Hoberman explaining the pills weren’t helping and the vomiting is bad.  She immediately conferred with Dr. VanderWoude who sent me to Holland’s Emergency Room.  Jill drove me there and it was there that I had tests run, including a CT scan.  I didn’t hear it then, but the second train was pulling into the station. 

ALERT!  God Moment:  Dusty happened to meet an old friend for lunch that day and as he was driving by the hospital on his way back to work he popped in so we could joke together about how silly my little ER visit is.  Stupid headaches. 

Jill met him in the hall and remembered telling him that we waiting for the results of the CT scan.  CT scan?  She needed a CT scan?  Dusty came into my room and a moment later Dr. Nicely came in to tell us of the two tumors the CT picked up.  All color washed away from Dusty’s face.  He looked like he was punched in the gut.  This wasn’t expected. I think my eyes were closed with my jaw on the ground and Jill was bent forward with her head in her hands.  This isn’t happening!  At the worst it was going to be meningitis.  That’s what Dr. Hoberman said!  Pesky meningitis.  Not brain cancer.   

Dr. Hoberman walked in the room and I swear as she did I could hear the train start up.   She explained that I could be admitted to get the tests going right away or go home and schedule the tests as an outpatient.  We wanted to get it done.  Get these tumors out of me NOW!  I was decided to send me to Spectrum because they have a bigger pool of brain surgeon’s to work with and that’s also where one of Dr. VanderWoude’s offices is. 

So I boarded the train.  This train was darker.  Not cheery.  Not comfortable.  Cold.  As I rode the train to Grand Rapids it was dark and as light fell through the windows I saw signs before me “Brain Cancer”  “No new body for you”  “How much longer”  “What about your family”  “What do I do now”.  There was no overhead music.  No brightness.  Disbelief.  Dispair. 

We arrived at Spectrum where we were well taken care of.  We had many well wishers and great nurses who took care of us.  The first night at the hospital was busy.  I had an abdominal CT scan at 10:30 at night and a head MRI at 12:30 a.m.  I had a bone scan the next day at 3.  The CT scan and bone scan both showed no signs of cancer – PRAISE GOD!  The MRI, however, showed six tumors throughout my brain.  It was explained that our brains have a natural defense against poinsons (chemo) going to the brain so my cancer spread the only place it could – my brain.  I have three large tumors in my cerebellum, two towards the top of my head and one on the right side of my head.  So far I can do everything I used to do.  I’m mobile and can still type on my blog.  The thing I miss the most is driving.  I’ve decided not to drive because of my risk of seizure.  But thanks to the great support I haven’t had a problem getting anywhere.  Aside from being very tired I’m okay.  I know I wouldn’t be this good if it weren’t for the prayers that are being said on my behalf – thank you. 

I was released from the hospital on August 3 and have been undergoing full brain radiation treatments in Holland.  When I’m finished with radiation (roughly 9 more visits) I will begin exploring Mayo Clinic and some other options that have been presented to me.  I plan on working closely with Dr. VanderWoude and greatly respect her advice for my next steps.

Please pray that God will continue to hold our family and friends up the way only he can.  Things are working really well for us right now.  Dusty is in a deep peace of mind and that is so comforting to me.  Brooklyn has been spoiled with a social calendar unlike anything I’ve seen before and the babies are doing great with grandma and grandpa.  Samantha is even showing interest in potty training!  YIPPEEEE. 

If you haven’t had a chance to read my post to my dad about his last day of work and would like to do so, please do it.  I would love if you could share a memory or story in the comments section so I can print those for him.  He will love to read them.  It will make his day! 

P.S.  There were no train rides.  It was just a metaphor.

Prayer Requests:

No Nausea

Good sleep at night

No Headaches

Continued energy for my parents, family and friends as we walk through this together. 

Thank you to all the radom acts of kindness that are being given to us – gift cards to restaurants, Captain Sundae, fundraisers, bake sales, the list goes on and on and I just don’t feel worthy.  God has been good to our family.  I believe he will carry me through this too. 

My goal is simple:  Stay alive.  Raise my kids.  Nothing else matters. 

Thanks Dad

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This morning my dad did something I never thought I would see.   He went to work at Genzink Plumbing where he has worked for 40+ years and put in his last hours.  It’s hard for me because I wanted him to do it on his own terms. 

My dad is a worker.  That’s who he is.  It defines him.  In the best way…it defines him.  He works.  That’s what he does.  It’s what he has done his whole life.   It’s what he loves to do.  He never worked at our expense.  He always included us.  He always taught us along the way.  He took us beside him and showed us what he was doing and if we were lucky, he would let us do it ourselves.  From milking a cow (I never actually did this – yuck), to stacking hay, to sodering a pipe, to sweeping a floor properly, to changing oil in our cars when we were 16. 

He grew up on a farm in South Olive, Michigan and has always been a farm boy at heart.  There is something that lives inside him to work hard for what he has.  Everything my parents have is because they’ve worked hard and have been conscientious with what they do.  They are kind and generous.   They have never hurt anyone to get what they have. 

I have many memories growing up of him receiving phone calls from neighbors, friends, family members, church members or someone in need a plumbing fix.  You know the perils – the water heater is broken, clogged toilet, overflowing something-or-other, the Mr. Fix-it’s trying to do their own work and now need the advice off a master plumber.   No matter what time of day or season – dinner hour (we always ate dinner as a family), or 9:00 at night in the dead of winter.  He would always go and help.  Not with a grudge.  He wouldn’t stomp his feet out the door shaking his head side-to-side mumbling under his breath.  He would do it with a SMILE.  He was happy to help.  He would say so-and-so needs some hot water or their toilet is clogged and they have company coming for the holidays tomorrow.  Off he would go.  Happy as a clam to do something he loved to do.  Work. 

I have more memories of job sites as a kid than what most kids would.  Genzink Plumbing has employed him well over the years and, if I may be so bold, my dad was a good employee.  I remember spending evenings in the warehouse at Genzink’s while dad would organize random parts from boxes to make the boxes complete again.  I remember going along at night with him to job sites while he worked.  I would pretend the poured concrete walls of the new homes were my balance beams and take my roller skates along to ride on the fresh poured floors.  If we were good and well behaved we would stop at the closest ice cream shop for a cone on the way home.  Yum!

It physically pains me to know that he worked his last hours today at a job he has held very well for many years.   I feel like he did it before he was ready because of me and my cancer/prognosis.  I didn’t want it to be like this.  I wanted it to be on his own terms and on his own time.  When he was ready and when he wanted to.  He deserved that much.  He earned it.

Thank you Russ and Rethea, Ross and Rick and the entire Genzink Family and team for working with my dad.  You have blessed him and our family. 

If you happen to see my dad, give him a hand shake, pat him on the back or give him a hug for what he has done. 

Even though his official days at Genzink’s may be behind him, he has a lot of work left in him and I think he’s saving it for his grandchildren. 

I love you dad.

Happy Monday

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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! 

Life

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My life has been hijacked.  A week ago Monday I was hanging out in Chicago meeting with my plastic reconstruction surgeon and finalizing the last steps before being rebuilt.  Then we went on to Shedd Aquarium and had a blast with the kids. 

Next thing I know, I’ve been derailed on an out of control track.  I went to Holland’s ER room for what I thought was a silly headache.  Got a CT scan, was told I have two tumors, was drugged and transferred by Ambulance to Spectrum where I was told the two tumors are actuallly six and I have maybe a year to live.  How did my life go from slowly going back on course to a “new normal” with a body that at least looked “normal” (boobs) to a complete turnaround where death is knocking at my door?!  This isn’t supposed to happen to people right?  Not at 33.  Not when they have three little kids who need a mom. 

My friend Holly sent me some very powerful words lately  I’m so thankful I got them.  I hope she doesn’t mind me sharing them with you:

Just some thoughts for you and some scripture:—  I want to encourage you in your thoughts and words because the bible says that ‘Death and life are in the power of the tongue; and they that love it shall eat the fruit thereof.’ Proverbs 18:21I always feel that this means it is very important the way we speak…..if God says in his word that death and life are in the power of the tongue then I choose to speak words of life.  I choose to speak life into this situation where doctors are speaking death.  I claim (by Christ’s healing power) that you WILL live, you WILL see your kids grow old, you WILL be healed.  What do we have to lose by speaking life into this situation?  Our tongues are powerful….speak life with it. 

Thank you Holly.  I will begin speaking life today.  All of you need to speak life with me today too.Thank you to Gregg and Monica for taking Brooklyn to the beach yesterday.  She had a great time and slept like a baby when she got home. 

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No place like home

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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. 

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

Hello from Spectrum

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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. 

Notice: My hosting company 1&1 recently upgraded the back-end engine that powers this blog. In doing so, they deleted all the existing images on the site. They are not assisting me with replacing the images they deleted, so I will be adding the images back as time allows. Thank you for your understanding.