Date

Ver Beek Blog

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

Archive for September, 2010

Yikes and Thanks

posted by:

In two days it will have been a week since the Gamma Knife procedure.  Overall I feel okay.  I have occasional headaches, nausea, lots of fatigue and I look like I was punched in both eyes.  They’re very swollen and I look terrible.  Nearly unrecognizable.  Yikes.

I was able to squeeze contacts in my eyes this morning so I could wear sunglasses to walk Brooklyn to school.  I would make small children run and scream for their mothers if they saw me.  I look a little scary.  When Max and Samantha first saw my eyes, they kept pointing at them and saying “eyes?  eyes?”  Poor kids.  First they see me without hair and now my face looks contorted.  I’m glad they won’t remember this.  They still love me the same. 

You know what I can’t wait for?  Crane’s.  It’s not fall until you go to Crane’s and drink some cider, pick some apples and get an apple dumpling or some other delicious apple treat.  As soon as I start to look “normal” we’re packing up the kids and heading to Fennville! 

This coming Friday, October 1 is the big bake sale at the Holland Christian vs. Zeeland East Football game.  Thank you Keely, Wendie, bakers and everyone who is taking the time and effort to put this together.  I know this takes a lot of work and we appreciate it. 

This coming Saturday, October 2 is the Community FUNDay at Elhart Collision.  Thank you Tony, Carissa and everyone at Elhart who put this together. 

The rest of this entry is a big, giant THANK YOU to everyone – so many people – who are supporting and praying for our family.  People we don’t even know are reaching out to us.  You are God’s people and such blessings to our family.

Thank you to those of you who are donating and returning pop cans.

Thank you to everyone who ran or walked in the Susan G. Komen Race For the Cure on Saturday.  What a great cause and let’s pray for a cure.  I heard it was a great turn out and I wish I could’ve been there. 

Thank you to the awesome cook’s who are bringing us meals.

Thank you to everyone who has donated money to us.  It takes a huge burden off our medical expenses and we are so humbled by your generosity. 

Thank you to the prayer warriors who are boldly praying for complete healing over me. 

Thank you to the card senders and little present givers. 

Thank you to everyone who hosted a party or sale.

Thank you to anyone I mistakenly overlooked. 

Love you all!

Home

posted by:

We flew out of Rochester with a storm on our tails, but thanks to Brad Pugh (Randy and Gail’s son) he flew us safely into Zeeland last night.  We were greeted by our family and friends – including Randy and Gail at the airport.  It was awesome.  There were balloons, flowers and best of all, our kids.  The Pugh’s were so kind to take Brooklyn, Avery and my dad for a  plane ride too.  Brooklyn LOVED it. 

brooklyn-in-pughs-plane-web.JPG

brooklyn-on-pughs-plane-web.JPG

What blows my mind is that I had this big procedure yesterday, flew home the same day and can recuperate at home.  I am so glad to be home.  Speaking of the procedure, overall it went well.  The worst part was having the head frame applied.  The local anesthetic they used felt like a million bee stings.  It was really painful.  Then a few minutes later the neurosurgeons turn the screws into my skull to secure the frame  It seemed barbaric.  Within moments I couldn’t feel any pain in my head, just pressure and the frame. 

I then went for an MRI.  The doctors met to discuss my treatment.  Then I had the procedure.  I laid on a table for 1 hour 40 minutes while five tumors were radiated.  I slept for most of the procedure – thanks to the “I don’t care” medicine.  When it was done, they removed the frame, applied a bandage around my head and sent me to my recovery room where I could meet Dusty again.  After an 1 1/2 hours we left the hospital and went back to the hotel. 

I clarified with Dr. Parney (neurosurgeon) that the five tumors they found on the MRI were the existing tumors and not new ones.  That was a big relief to me.

My next steps are an MRI in a couple months to see how the Gamma Knife worked.  I’m also going to begin working with the University of Michigan and am working on getting an appointment with them. 

Today I feel very tired.  My head hurts and my eyes are swollen.  Small price to pay. 

Thank you for your prayers.  For those who held us up in prayer whether you were at church, home, work or wherever.  God is good and has done great things for me.  I saw Him many times while we were at Mayo.  I love it when He shows up. 

Saturday is the Susan G. Komen Race for the Cure.  I can’t wait to see everyone there. 

Now we live

posted by:

Five tumors were “zapped” today.
The comprehensive MRI today picked up remaining tumor tissue that didn’t show in the last scan. We’re so thankful that these additional tumors could get the Gamma Knife as well. Lindy is resting and doing quite well considering what just happened.

Due to inbound nasty weather, we are flying back home late this afternoon. it’s amazing that we’re able to leave so soon. We’ll have to wait a couple of months to know if this worked, but at least it’s done. Now we live.

Underway

posted by:

For all those that are praying for Lindy today, we thank you. Her surgery is underway. They called up to me and said it was going to take longer than previously thought. Not sure what that means, but will not speculate until I hear more.

I’m Ready

posted by:

We arrived safely in Rochester, Minnesota and had a great flight.  Randy is an excellent pilot and I think Dusty is going to enroll in flight school now.  Thank you Randy for taking us. 

I had four appointments today to prepare for tomorrow’s procedure.  I’ve been blissfully ignoring pictures of the head frame they’re screwing on me.  Today I saw pictures of it.  That is the one thing I look the least forward to.  Everything today went well and I feel like I’m in good hands for tomorrow. 

I don’t have a specific time the surgery will be performed.  I need to report at 5:30 a.m. (6:30 a.m. Michigan time) at which point they will take me down to the surgery area and they’ll bring Dusty to the waiting room.  They will put the frame on my head, send me for an MRI, doctors will discuss how to best treat me and then I’ll go have the Gamma Knife procedure. 

Gamma Knife is a very precise instrument that uses high levels of focused radiation to treat the brain.  Using this method, neurosurgeons are able to focus radiation directly, and very precisely, on the targets in the brain without affecting surrounding healthy tissue.  Over time, the radiation will react on a molecular level with the cancer cells and stop their reproduction, which in turn kills the cancer.  

When the procedure is finished (they don’t know how long it will take until they have the MRI results), they will remove the frame, bandage my entire head and send me to the day ward where they will make sure I’m okay and send me on my way.  I can’t believe it’s an outpatient procedure.  That seems crazy to me.  Amazing. 

I am so humbled and grateful to know there are people praying for me around the clock on Wednesday.  Thank you to everyone who is going to take time out of your busy schedules and maybe even lose sleep to do this.  It means so much to me and my family. 

Thank you to everyone who is participating in the Susan G Komen race this Saturday.  I think our Laps for Lindy team now consists of more than 70 people.  Thank you for supporting this cause.  

Prayer requests:

  • Guidance for the surgeons, doctors, nurses, techs and everyone who will be in my path tomorrow.
  • COMPLETE and continued freedom from cancer.  That tomorrow’s procedure successfully removes all tumors and the tumors DO NOT return.
  • Strength and energy for our parents, family and friends. 

Wheels Up

posted by:

Thank you for your prayers, emails, cards, financial support and love.  Dusty and I are so humbled and grateful for all of it.  People we don’t know are praying for us, sending us messages and cards.  It’s amazing.  If you ever started to lose your faith in mankind, ask us and we’ll re-establish it.  People have big hearts.  I don’t feel deserving of it. 

We are flying to Mayo today.  We’ll spend the evening settling in and tomorrow I meet with the radiation oncologists, nurses and other various people who need me to sign papers.  On Wednesday I report to the hospital at 5:30 a.m.  I don’t know what time the procedure will be so we’ll post something on Facebook once we know our schedule. 

When we met with the doctors at Mayo and Duke I asked them if my prognosis will change once we get rid of the brain cancer.  The answer was no.  I need to be watched very closely because my cancer is aggressive and invassive.  So I need to live my life either fighting cancer or watching for it to come back.  That is where fear likes to settle in and get comfortable.  Fearing when the cancer will return.  I need to focus on the other F word.  FAITH.  I need to have faith that God can and will heal me COMPLETELY.  He can heal me for the rest of my life here on earth.  I 100% believe he can do it.  I just need to crush the doubt that he won’t do it for me.  I don’t feel worthy. 

Thank you to everyone who signed up for a prayer time slot this Wednesday.  It’s comforting to know that we’re being supported in prayer. 

We’ll try and keep you updated as we get closer to the big day. 

Love you all!

September 20, 2010 Awaiting Departure to Mayo

Randy Pugh and Dusty September 20, 2010

Home Again

posted by:

 Duke University Clinic Building

I’m happy to say our trip to Duke was successful.  We met with Dr. Blackwell who specializes in breast cancer and she not only agreed with Mayo in treating my brain with Gamma Knife, but also suggested treating me with either an oral chemo pill that can pass the blood brain barrier or a clinical trial or both.  She said my brain is one thing that we know needs treatment, but she’s also concerned about the rest of me.  She said if one cancer cell could survive all my prior treatments and was smart enough to take up residence in my brain, then she wants to make sure there are no other smart cells to take up residence from my neck down.  She would follow me very aggressively seeing me every three weeks and having scans run every nine weeks. 

Duke Medical

She gave a lot of great suggestions and advice.  She also suggested that I begin working with a major cancer center in Michigan, such as U of M, and with a doctor who specializes in breast cancer and is on top of all the clinical trials.  She said it didn’t matter where I get my brain tumor zapped (Mayo or Duke), but that being a 33-year-old YOUNG woman I need to work with a major cancer center. 

I made the appointment with Mayo to have the Gamma Knife surgery next Wednesday.  I’m nervous, scared and excited.  Thank you to the Pugh’s for flying us to Minnesota for this procedure.

Right now I am so sick of cancer.  I’m sick of talking about.  Reading about it.  Hearing about it.  Learning about it.  Remembering I have it.  My life has been consumed by cancer lately and I’m sick of it.  So sorry this isn’t a really great posting, but I’m trying to rebalance my life so that cancer isn’t the center of it. 

Thank you to everyone who helped out with the kids while we were gone.  It’s hard to be away from them and it’s hard to think I’m leaving again.  We couldn’t do this without everyone’s help.  Thank you!

 

Home Sweet Home

posted by:

We’re home!  It’s been a long week.  Our journey began with a slight hitch in our giddy-up.  It was too windy to fly on Tuesday so we drove to Mayo.  It’s a good thing too because when we went past O’Hare, we could tell planes were struggling with their wings dipping left and right.  We even saw a jet abort their landing.  Never saw that before.  I wouldn’t have wanted to be in a single engine plane in those winds.  Thank you Randy!  The drive went well and I had no idea that Wisconsin and Minnesota were so pretty.  The Mississippi River is beautiful. 

We never expected to be at Mayo for as many days as we were.  We almost had to stay one more day (today) and come home tomorrow.  Then God worked another miracle.  I saw God in small ways and big ways this week. 

Mayo Sign

Dr. Goetz was the doctor we were scheduled to see.  He’s an oncologist.  After waiting two hours to see him, he gave us 5 minutes of his time (two of which were taking a phone call) and told us we need to see a neuro oncologist and have an MRI.  He acknowledged the MRI would be early, but necessary to make a decision.  Needless to say we were frustrated, disheartened and discouraged. 

God moment:  They got us in with the neuro oncologist the following day!  Typically it takes months to get in with them, but we got in the following day! 

One more night at Mayo.  Unfortunately we checked out of our hotel expecting to go home after seeing Dr. Goetz on Wednesday.  So while I was having an MRI, Dusty found another hotel which had one room for one night (God moment).  Busy town. 

Mayo Main Lobby

Thursday our appointment was scheduled with Dr. O’Neill (neuro oncologist) at 2:00 p.m.  We were in his patient room until 5:30 p.m.!  First we saw Dr. Chang who ran me through what I lovingly call neuro Olympics.  Follow her finger with my eyes, touch my finger to my nose, resist her push/pull, etc.  I passed in flying colors. 

After a stretch of time, we saw Dr. O’Neill who was very personable and informative.  He and Dr. Chang compared my end-of-July MRI to the MRI I had on Wednesday.  There was a significant difference in the tumors.  The huge one in my cerebellum (affects balance, etc) is the one that’s of concern.  They determined that it is bleeding slightly (not hemorrhaging).  He wanted us to stay another night and meet with the neurosurgeon today.  When they left the room I could’ve cried.  I was planning on being home Thursday.  I missed my kids like crazy.  God moment:  Instead of coming back to the room with an appointment for today, they came back to the room with Dr. Ian Parney, Neuro Surgeon. 

Dr. Parney explained that I had an excellent response to radiation even on an MRI done early.  He said it was amazing.  I call it a miracle.  (God moment)

Dr. Parney gave me three options: 

1.  Wait four more weeks, have another MRI to see if the tumor has shrunk more.  He didn’t think it would since there is blood present.  Risks are slight hemorrhage (balance and headaches) to a large hemorrhage (life threatening). 

2.  Open me up and operate on the tumor.  Many risks involved.

3.  Gamma Knife Surgery.  This is his recommendation.  It involves screwing a metal cage to my skull in four places.  Two on my forehead and two on the back of my head.  You would think they’d knock me out for this.  Oh no.  They give me local anesthetic where they put the screws and some “I don’t care” medicine.  They better double the dose because I really care.  Then I have an MRI with the cage on my head so they know precisely where the tumor is in relation to the cage.  Then I go to surgery, which isn’t really a surgery at all.  It’s a very high dose of radiation (laser) given in a very precise, specific location of the brain (my tumor) and will knock it out. 

We then asked the question everyone skirts around.  Life expectancy.  He would precede all of his opinions with “I don’t have a crystal ball”.  He goes on averages.  On average, someone with brain mets (me) lives about a year.  However, I have a few things going for me.  I’m young.  I don’t have cancer elsewhere in my body.  I’ve had a very good response to radiation which tells him I’ll have a good response to the Gamma Knife Surgery.  I had a good response to breast cancer treatment.  He has seen women who had breast cancer mets to the brain live for years.  He also forgot to mention that I’m a child of God and He will heal me. 

We felt like we had the complete Mayo experience yesterday.  Wednesday was just a bad day. 

We were nervous about going to Duke because we didn’t want a repeat of Wednesday (a doctor trying to brush us off).  We wanted to be sure we were seeing the right type of doctor.  After calling Duke and talking with them, they assured me I was seeing the right doctor so we decided we’re still going to Duke.   

We are SO THANKFUL we at least have an option at Mayo.  I feel better if I get a second opinion before going through the surgery. 

Waiting

Thank you for your prayers.  The week went well and it was great to see God show up in so many ways. 

Brooklyn is doing well at school (loving it) and Max and Samantha had fun with grandpa’s, grandma, their aunt Becky and Kathy Timmer.  Thank you everyone for watching the kids and continuing to do so.  We couldn’t do it without you. 

Good news and news

posted by:

I’m typing on dusty’s blackberry so this will be short and sweet.

Good news: 4 of the 6 tumors are no longer visible. Praise God for good news.

Two tumors remain. 1 very small and may go away as the radiation continues to work. Time will tell. Overall the neurosurgeons were impressed with my response to radiation. The second tumor is bleeding slightly. They suggest having Gamma Knife Surgery on the tumor. Details to come.

Mayo Marvel

posted by:

We arrived safely at Mayo Clinic in Rochester, Minnesota yesterday evening.  Due to the high winds, we were not able to fly as originally planned.  Instead, we had a nine hour road trip here.  We had a good time watching the country side and reflecting on life.  By the way, where are all the cows in Wisconsin?  Lindy napped (even with me driving), so I must have been well-behaved.   For those that have rode with me,  you’ll understand how big this is. 

Lindy is in getting a MRI as I write this post.  We’ve been here about 10 hours getting several tests ran and meeting with medical professionals.  Mayo runs a tight ship.   This MRI will tell us how well Lindy’s brain received the radiation and if the tumors have shrunk at all.  This is pivotal to next steps determining treatment.   Please pray the tumors have shrunk or are gone completely.   We hold out hope for a miracle.  

Tomorrow we meet with a famous Neurological Oncologist (they were booked six months out yet still got us in to see them).  Amazing how God opens doors.  Depending on the results of the MRI, there may be special clinical trials that she may qualify for.  We have a summary meeting late in the day with Dr. Goetz, her Oncologist to discuss possible next steps. 

The gravity of this situation is sinking in for us.  Seeing all the sick people here is scary.   It’s too real.   Gravely ill people from all over the world coming together here for one thing: HOPE.  We were greeted by a man vomiting all over himself and the lobby when we arrived.   This is where we are.  Here. 

Tonight will be difficult.  It’s hard to wait until tomorrow afternoon for MRI results.   Satan has a way of putting doubt in your head.  He plants anxiety and ignites fear.   There’s too may ‘what-ifs’ that pop into your head when you wait for these test results.  

We will post more information as soon as we can.  We love you all and thank you for supporting us in so many ways.  We are so blessed. 

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.