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


SPRING!

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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

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Max enjoying the first nice day of the year:

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Samantha loves climbing and is always on the move

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

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Samantha and Max inspecting the lion

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Brooke and Avery at the GR Museum

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Red, White and …

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It feels strange to write something on my cancer blog.  I promised I would update when I had something to say. 

I had a blood draw last week and saw Dr. VanderWoude (oncologist) on Tuesday of this week.  Overall, things look good (praise God).  My hemoglobin is still low at a 10, but it’s better than where I was a month ago which was 9.  Normal is 12-16.  My white blood cell count is low, but not low enough to concern the doctor.  This means that I’m tired (hemoglobin) and that I’m more susceptible to illness (white blood cells) so I need to take extra precautions with washing my hands and staying away from  people with illnesses. 

My every day life is going good, all things considered.  My mom helps me tremendously with Max, Samantha and Brooklyn because I get tired so quickly.   Other than that, things are good.

This past summer when I was going through chemo I would sit in my anti-gravity chair on the front porch.  It was the most comfortable and the fresh air helped.  I was dead tired, sick and fighting like a champion to beat the cancer.  I would see people walk, run, rollerblade or bike past the house and I couldn’t wait to do that again.  I dreamt of the day when I could take my kids for a long walk to the park.  Then while going through radiation I read an article in the Holland Sentinel about climbing the steps of Mt. Pisgah in Holland.  That was my new goal.  As soon as I had enough energy I was going to climb the 239 (I think) steps to the top.  A few weeks ago Brooklyn and I did it.  It was so fun.  I climbed a mountain.  I don’t know if it’s technically a mountain, but it’s called Mt. Pisgah so I’m going with it. 

Here is me and Brooklyn at the top:

lindy-and-brooklyn-on-top-of-mt-pisgah-21210-web.JPG

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Prepare to have your mind blown.  As you know Dusty is the computer/techy guy in our family.  He set up this blog for me and occasionally checks the stats of the blog.  This past summer when I was going through chemo and blogging about my pathetic journey, I had a total of 16,000 unique hits.  That’s a one, six and three zeros people!  I don’t know 16,000 people.  I’m not sharing this with you to massage my ego.  The thought that quickly occured to me was all the comments that I received from you were probably read as well.  Your comments were encouraging and many of them talked about God, quoted scripture or verses of songs.  Just imagine the amount of people you may have reached by your comments.  Amazing.

That’s all for now.  It’s been great seeing so many of you again.  Thank you for your prayers.  Please pray that I will continue to get my energy back and that my blood levels return to normal. 

All Done!

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For the past seven weeks my life has been the same thing from 11:45 until 12:30. 

I would pack up the kids, bring them to my parent’s house and go to radiation.

This is LAROC (Lakeshore Area Radiation Oncology Center).  It’s the building where I get radiation done.  There are no bad smells in the building.  It’s not “clinical”.  It’s very zen.  There are water features and soothing music throughout the building.  Oh and carpet.  Not hard vinyl tile floor like a hospital. 

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Everyday I would walk in the sliding doors, proceed through the regular waiting room and go to the special waiting room.  I named it special because it’s where people like me wait to get radiated (or what Dusty likes to call radiant).  Then one of the radiation techs calls me back to a room that is built like a vault.  It has a thick steel door and the walls are 4-6′ thick. 

Here are the wonderful radiation techs who I see every day.  Marie, Karen, A GVSU Student and Linda.  Bob works there too, but he must have been at lunch.  My appointments are always over their lunch shift. 

 laroc-team.JPG

This is the table that I lay on to have radiation.  My arms go in the red stirrups and the triangular pillow goes under my knees.

Once I’m on the table, the techs get me situated perfectly so I don’t get accidentally radiated in other body parts.  When I’m right where they want me, I cannot move an inch.  They leave me alone in the room and go to their hub.  Their hub has four computer screens and a closed circuit television to watch me on.  Once they’re ready, the machine moves around me and I get radiated in five different areas.

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Then they send me on my merry way.  Although today they gave me a certificate and a coffee mug. 

Today was my last day of all cancer treatments!  No more chemo.  No more radiation.  Nothing.  I feel like I should run through one of those finish line tapes that you see at the end of a race.  If I see one today I’m going to run through it pumping my fists in the air.  It feels awesome to be done.  Absolutely wonderful.  I can’t put into words how thankful I am to be done with treatment and most of all to be cancer free!

From this point forward I have routine check ups with my oncologist every three months where they check my blood and make sure my numbers are good.  I’ll keep my blog updated when I get any news, but from now on, I won’t be writing much.  

So many of you held my hand through my treatments and I will be forever thankful for you.  I couldn’t have done it without the healing hand and grace of our great savior and God or without his wonderful people.  Thank you for walking with us on our journey.  God Bless.

“For I know the plans I have for you,” declares the Lord, “plans to prosper you and not to harm you, plans to give you hope and a future.  Then you will call upon me and come and pray to me, and I will listen to you.  You will seek me and find me when you seek me with all your heart.” 

-Jeremiah 11

Almost Done!

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I can hardly believe I’m almost done with all cancer treatments!  Thank God!  I will have my last radiation treatment on Friday.  I am so happy, so relieved and so excited.  I should celebrate.  Hmmmm…what to do.

I saw Dr. Edlund today (radiation oncologist) and he said my skin reaction is appropriate and that I shouldn’t have any problems from here.  Since Tuesdays are the day I see the doctor, they gave me discharge instructions.  I couldn’t believe I was being discharged.  Another surreal feeling.  The good news is that the fatigue should last for only two weeks after my last radiation treatment.  I can’t wait to have full energy back.  Maybe I’ll run a marathon or something…

Dusty and I went to Chicago to meet with Dr. Song (reconstructive plastic surgeon) yesterday.  I was presented with three options here in Holland – implants, lat flap and TRAM flap.  Plastic surgeons don’t like the idea of doing just implants when skin has been radiated because the results won’t look good.  The other two options take my muscles and I wasn’t happy about that.  Dr. Song performs the DIEP flap which we thought was newer, but upon talking with his nurse they’ve been doing it for 16 years!  I felt like a hill billy asking about that new fangled operation where they use electronical gadgets to reconnect my blood vessels.  I’m glad we made the small trip because Dr. Song gave me more options than I thought possible.  All of which don’t include taking muscles.  His final recommendation is probably what I’ll go with, but there is one other option that I want to look into as well.  The surgery can’t happen for six more months.  I have time to think about it.

So that’s it in a nutshell.  I could write a small novel about my reconstructive options, but I’ll spare you. 

Have a great day! 

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