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Ver Beek Blog

Our young family battling stage IV breast cancer one day at a time
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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”

I’m still here

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I feel like Spectrum Health is becoming my second home.  My first radiation treatment went well tonight.  They mold a mask specifically for my headshape and then zap me.  The mask will always be my mask.  When I’m done I get to keep it.  If I had a mantle, I would put it on there. 

The reason they’re aren’t sending me home today is because 1.  My radiation treatment was so late in the day and they need to make sure I react well to it (so far, so good) and 2.  They need to make sure my headaches can remain under control at home.  I’m getting mixed signals from the nurses on this.  Some imply that it should go well and other’s seem to question it.  I’ve been assured, however, that I’m going home tomorrow. 

I called my parents to give them an update and see how the kids were doing.  The kids are doing great.  My dad has taken some days off to help my mom with them and Max is following Grandpa around like a proud little cub.  Samantha and Brooklyn are having fun with grandma.  When I talked to Brooklyn tonight she cried.  She said she was afraid we were never coming home.  That was hard to hear.  She’s such a tender soul. 

I have eighteen rounds of radiation to go.  Most of them will be done in Holland, but I do not have a specific time set up for those yet (therefore, no sign up sheet has been created yet). 

Thank you for your advice and tips on where to go for treatment.  I have a nice list going, but after talking with Dr. VanderWoude today, I feel she has my best interests in mind and wants me to go to where I’ll get the best help.  Right now that seems to be Mayo Clinic.  I have the forms filled out for Wings of Mercy and will proceed further with those tomorrow when I go home. 

Thank you for the prayers, kind words and deeds you’ve done for my family.  Please remember that Brooklyn doesn’t know about the time frame that has been given to me, and at this point, we don’t feel it’s necessary to tell her about that.  We would appreciate you use discretion around that too. 

I’ll be in touch tomorrow.  Everyone take care.  Don’t forget to sign up for Laps for Lindy if you want to participate.  Click on “Race For A Cure” on the right hand side of the page. 

God bless you!

Thank you

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Thank you to everyone who came to the worship service last night at Haven CRC.  My two Jill’s (friends) came to the hospital with laptop in hand (and chex mix of course) and we watched it on that.  I am grateful to have so many people lifting me and my family in prayers right now.  We need them.  Please do not stop.  I beg that God will erase these tumors so that I can live a long and full life with my family.  Thank you to everyone who has sent letters, cards, email, prayed for us.  Words cannot say enough.

I’m still at Spectrum as an inpatient and I have my first radiation treatment today at 4:15.  I don’t know when I’m going home, but I hope it’s tonight. 

Annointing with Oil

Our Pastor and a group of Elders came Saturday evening (7/31/10) to pray with us and also annoint me with oil.  This was so special and a very emotional moment. 

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. 

Muffin Cups

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A lot has happened since I first met Heather, but I promised to tell you the story of how I met her and here it goes.

I was getting groceries at Meijer.  I went through the baby section to buy diapers and essentials.  Typically when I leave that section I go into the main aisle and continue to the pop, butter and yogurt section and weave my way to the front of the store.  This time, however, I didn’t go to the main aisle.  Instead I turned my cart around and found myself in the housewares department by all the kitchen gadgets (spatulas, measuring cups, etc).  When I realized where I was I bolted down the nearest aisle to move along with my groceries (time is of the essence).  The aisle I was cutting through was the cake decorating aisle and muffin cups caught my eye.   Plain white muffin cups.  I wasn’t planning on making cupcakes or muffins or had ever wondered where plain white muffin cups might be, but there I was staring at them nonetheless. 

I shook my head and moved on to getting groceries.  A few aisles into it I was looking for the semi sweet chocolate chips and I saw a woman bent down looking at something on the bottom shelf.  I heard a younger voice behind me say “no those aren’t the ones I was thinking of.  I know I got muffin cups somewhere here before, but I don’t remember where”.  So I turned to tell her how I just saw plain white muffin cups in the cake decorating aisle, which at this point, was right across from where we were standing.  As I turned to face her I noticed she was wearing a scarf on her head.  I don’t remember my exact words, because they just started falling out of my mouth, but I said something to the effect of “how are you doing”.  She looked at me like I was on another planet.  I said “I see you’re wearing a scarf.  I assume you have cancer?  Is it breast cancer?”  She confirmed it was and continued to stare at me like I was crazy.  She let her guard down as soon as I told her I had breast cancer and beat it last November.  We started talking, her mom started tearing up.  It turns out that we both have/had the same rare type of breast cancer – triple negative.  She had some questions and I answered them to the best of my ability.  I remember getting groceries during chemo and how it was a battle to do it so I told her I would let her get going, but that I wanted to encourage her and to let her know that she can do this and she looked good (despite how she felt).  

I walked away and as I continued getting my groceries I knew that moment could only have come from God.  There is no way I would have just started talking to someone I’ve never met with a scarf on her head.  Someone told me to reach out to her that day and I did.  I’m glad I did too, because by the power of Facebook it turns out she knows someone I know and now she and I are in a small little support group we started (I missed our first meeting because of my pesky brain tumors). I can’t wait to get to know her and the other girls in our little group a little better. 

There are no coincidences in life.  Especially with muffin cups.

One year…

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I can’t sleep.  I couldn’t sleep all night.  We had great groups of people visit us last night.  We had a marathon day of tests and meetings with doctors that I thought we would fall right into bed and zonk out for the rest of the night.  The last person of the night to stop in was Dr. Vander Woude (oncologist).  She was the doctor we were waiting to hear from for my prognosis.  She stepped around the questioning at first.  I said “do I have three days”?  She said “oh yes, you have three days.”  Then I said “is it months or a year?”  she said “probably a year”.  There it is.  There it was.  It was put out there.  Like a sucker punch in the gut that knocks all the wind out of you.  I have about a year to live.  I never thought I would say those words.  The radiation and any other procedures they do are to buy time.   

Just as we were going to bed, Dr. Hoberman called our room phone.  She spoke with Dr. Song (reconstructive plastic surgeon in Chicago) who happened to be on vacation, but was very happy to talk to her about me.  Dr. Hoberman is going to place some calls today to see what she can find out about alternative treatment at a bigger hospital or the Mayo Clinic.  Dr. VanderWoude is coming back in today (I’ts her weekend to work) and we are going to talk more about getting me to Mayo Clinic on Monday.  Does anyone have a private pilot’s license and feel like taking a trip to Mayo?  😉

Dusty and I are devastated.  We are beside ourselves upset with this news and don’t know how to process it.  I believe in the prayers that are being said.  We feel a peace at times that we know only could come from God. 

Please pray that we are led in the right direction for treatment.

Please pray that as Dusty and I look to the year ahead we will have two different outcomes so pray for him as he is the one left behind to be with our kids.  To raise them. Love them. Clothes them. Feed them.  Be a mom to them.

It breaks our hearts.

We need your help so if you know of alternative places such as mayo or chicago that do extensive/miraculous work with multiple brain tumors we would appreciate the information.

God Bless

Not good…

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We are settled into our room at Spectrum (Butterworth) Hospital.  I had a CT scan of my abdomin and pelvis last night around 10 p.m.  I don’t have the results of that.  They did a brain MRI at 12:30 a.m. and we got the results of those today.  It turns out I have six tumors.  Three are quite large and are the ones causing the headpain and nausea.  Two are “normal” size and one is very small.  The PA from the neurosurgeon’s office said since I had so many of them that surgery isn’t an option in their opinion.  She said they would just grow somewhere else in the brain or grow in the same spot. 

The PA from Dr. VanderWoude’s office came about an hour ago and said it’s Stage IV cancer and the prognosis isn’t good. 

We still have to meet with the Radiation Oncology Team. 

My bone scan is scheduled at 3 p.m. 

I’m terrified.  I cannot bear the thought of leaving my kids without a mom.  I know I shouldn’t go there yet because we don’t know the exact prognosis, but that’s where my mind goes.  They’re too little.  I have to raise them.  I’m their mom.  I want to be there for them.  This is a horrible thing to have to process.

Please pray for:

Results of my bone scan to be cancer free.

Peace and God’s prescence, love and comfort in our lives.  I want to hear his voice.

Our kids.  Brooklyn is only six, Max and Samantha are 1 1/2 years old.  Even if the prognosis were good, this still isn’t fair to them to have their mom away from them. 

Our parents.  They are our rock for our family.  Please pray for strength, peace, endurance and energy to keep up with our kids (my parents are taking care of them right now).

My friends.  I have great friends and Jill has been with me every step of the way.  She’s even here right now. 

Pray that we will not grow weary.  I HAVE to beat this.  It’s not a choice.  God is the great physician and can work miracles. PRAY FOR A MIRACLE!

It’s back

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The headache and nausea didn’t go away so I called Dr. Hoberman’s office this morning. She consulted with Dr. VanderWoude and together they decided to send me to Holland Hospital. After they did a head CT, they found two brain tumors. At least now we know what’s causing the headaches. They admitted me to Spectrum and that is where I’m sitting now. I have a night full of tests ahead of me-MRI, CAT scan and bone scan.

Please pray we caught the tumors early and that the cancer hasn’t spread. Pray for Dusty, the kids and my parents. Pray that I can beat this cancer too.

We will update again after the tests are done and we meet with the neurosurgeon.

Impatiently waiting

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Do you ever have anything that consumes your thoughts?  Something you can’t shake from your mind?  I wish I had something profound, deep, spiritual or thought provoking that consumes my thoughts, but I’m sorry to say it’s my upcoming surgery.  It’s always on my mind.  I’m anxious.  Nervous.  Excited.  I can say one thing – I’ll be happy when my boobs are attached to my body again.  Do you know how many times I’ve left the house and realized I forgot my boobs?  That is something I never thought I would have to think about. 

I try to think of every possible scenario and find a solution to it.  What if Dr. Song finds he can’t do the DIEP procedure because of my crash c-section?  How long will the surgery take?  What’s recovery going to be like?  Since I can’t lift for six weeks, what about my kids?  Will I be able to walk Brooklyn to her first day of school?  Will I be able to do laundry?  Will I be able to get groceries?  If I can’t stand straight up, how will I sleep?  How will I take a shower? 

Here are my solutions:  Dr. Song won’t know until he opens me up whether I have damage from the crash c-section.  There is a 90% chance that he will be able to do the procedure despite my medical history.  The surgery takes roughly eight hours.  I’ll spend about three days in the ICU.  Recovery is about six weeks.  I won’t be able to stand up straight or lay flat for two weeks.  I can’t lift for six.  I have childcare lined up for Max and Samantha – thank you mom, Jill and Kathy!  I am making freezer meals so my family can eat.  Since I missed Brooklyn’s first day of kindergarten last year, I will be there on her first day of school this year even if I have to crawl.  The laundry and groceries will get done and I’ll sleep in a recliner.  I still can’t stop my need for controlling things!

Information on Dr. Song

Information on the DIEP procedure

I am going to Chicago on Monday to meet with Dr. Song for my pre-op appointment and to meet with Anesthesia Department.  I’m making the most of it by taking Brooklyn, Jill and Avery along.  We’re going to the Shedd Aquarium when I’m done.  Fun!

I would like to think that cancer doesn’t exist now that I’ve beat it.  It’s still out there and still attacking young women/moms!  I’ve met a new friend at the end of my cancer last year who was just diagnosed at the time (hi Amy!).  I’ve been in contact with Lynette Bell who I know many of you are friends with or have heard of.  I met another young mom in Meijer a few weeks ago (hi Heather) who is going through the same treatment as I went through last summer.  How I met Heather is amazing and only something God could do.  Since this post is quite long I will blog about that meeting another time.  So now I follow their blogs and pray for them the same way people prayed for me.

Pucker up!

Pucker Up!Snacktime Maxblog-61310-samantha-with-juice-box.jpgblog-63010-3.jpg blog-61310-isnt-he-cute.jpgblog-samantha-61610.jpg


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