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Ver Beek Blog

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

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Since my last post I had another blood transfusion (last Friday) and thoracentesis (this past Monday). 

I said to Dusty that ever since I went to the ER and spent a week in Spectrum a few months ago that things with my cancer have changed.  For the worse.  Yes the chemo is shrinking the spots we can see, but it’s clearly not helping with the fluid.  The doctor who performed the procedure said I would probably have this every three to four weeks!  Ouch!  Having the fluid drained hurts.   

Last Wednesday we met with Dr. VanderWoude.  She thought it was going to be a routine visit until I dropped this question on her.  “What’s my prognosis?”  She sat down and explained to me and Dusty that I’m at the point where  chemo, any chemo, is not going to give me more time.  She said I can keep taking the chemo if it makes me feel like I’m “fighting”, but she said that if I choose to stop treatment it’s not giving up.  I would be opting for a better quality of life.  Chemo made me miserable.  It was no way to live.  Most of my time was spent sleeping or in bed.  We left her office with a big decision to make.    

After an afternoon of ups and downs, prayers, thoughts, and questions, Dusty and I decided to stop the chemo.  I’m done with the misery.  Dr. VanderWoude estimates I have 6 months left (give or take). 

We are now working with Hospice.  I will meet my nurse tomorrow.  Her name is Jane. 

Please pray for our family as we work through this new phase of life and guide our children through it.  Pray for the kids.  Our family.  Our parents.  Our friends. 

We’ve been blessed by so many.  I will update my blog whenever anything exciting happens.  I promise.    

Thank you to everyone for bringing us meals, the gifts cards, and donations.   

We will continue to have all communication go through Dani.

Please do not stop by unannounced.  We just can’t deal with that right now.       

Another One Wins the Race!

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Our heartfelt sympathies go out to the Ellen VanOss family.

We had the privilege of meeting Ellen and Jack for dinner a while ago.  Ellen and I had/have the same type of breast cancer.  The beast known as Triple Negative.  She was diagnosed seven months before me.  She and Jack have two small kids.  She won’t be forgotten.

In the words of Jack on 7/20/12:

A little before noon today Ellen crossed the finish line. She won the race and is in heaven right now receiving her prize. Well done good and faithful servant! She was a wonderful wife, mother, daughter, sister sister in-law and friend. She has taught us all so much about life, death and grace. She will be greatly missed.
I’ll post the arrangements when they are set. Thank you all for your prayers and encouragement.

My Thoracentesis last week went well.  It wasn’t a fun procedure, but I’ve had worse.  I would say having a halo screwed into my skull is worse than having a needle to numb and catheter put into my back for 15 minutes.  They drained 900 ml from my right pleura.  Afterwards felt a tad sore, but mostly better and able to breathe.  Everyone at Spectrum was great.

I had my labs drawn this week and found out my white blood cell count is too low at 0.9.  This means I should avoid large crowds, touching people, wash or sanitize my hands as much as possible and basically avoid contact with anything or anybody.  Does anyone have a bubble I can live in until my count rises?  My hemoglobin was at 9.4 or 9.6 (can’t remember).  With my red and white cells working against me, I am VERY tired and could sleep all day.  Yesterday I practically did.  I have to pick and choose how I use my energy.  I don’t like living this way.

12.26.11-Max-Sleeping-with-new-blanket

Thank God for Dusty.  He takes the kids to the pool nearly every night.  If he needs to run an errand, they all go along with him.  One night I was putting Max to bed and I said “You have a really great dad”.  He said “Yeah he takes us places with him.  I love him”.  So sweet.

Next week is chemo.  Please pray with me that my WBC and Hemoglobin are at a safe level so I can receive chemo.  That my fluid does not accumulate.  That my pain will lessen.  For my family.  For our support system – we would be lost without them.

Thank God for doctors, family, friends, insurance, jobs, and things that make you smile.

All in a week

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My blood transfusion I had last Friday gave me a boost.  I went from 7.6 to 9.0.  Still low, but I’ll take it.  The bottom of normal is 12.  All in all, my energy has improved slightly.  I thank God for that.  The color in my face returned a bit.  I don’t look as creepy as I used to.

Wednesday I had another round of chemo.  It went fine.

Today I woke up looking like I was punched in the nose.  No bruising, just a puffy nose bridge and eyes.  I have no idea what that’s from, but I’m too tired to care.

Later today, Dusty and Brooklyn are taking me to Lemmen-Holton Cancer Pavilion to have a Thoracentesis.  This is to drain the fluid from the space between my lungs and my chest wall.  I’ve been told they do this “all the time” and “they’re really good at it”, but I’m still nervous.  Any prayers you could provide today around 12 noon or 1 o’clock would be greatly appreciated.  Please pray my lungs and/or no other major organs are accidentally punctured.

We thank everyone for their kindness.  Whether it’s taking care of our kids, prayers, cards of encouragement, meals, gift cards, etc.  It’s all so uplifting.

Thank you for walking through the desert with us.  Cheering us on.  Reminding us that you’re in our corner.

We are to pray in times of adversity, lest we become faithless and unbelieving.

We are to pray in times of prosperity, lest we become boastful and proud.

We are to pray in times of danger, lest we become fearful and doubting.

We are to pray in times of security, lest we become self-sufficient.

-From one of my daily devotion books Hope for Each Day by Billy Graham

ixna on the loodba ansfusiontra

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After waiting three hours at the hospital for my blood transfusion yesterday I was sent home.  Without a transfusion.  I have antibodies in my blood.  You may be asking “what” “why” “where did those come from” “never heard of it”.

After I gave birth to Max and Samantha I was anemic and had a blood transfusion.  I remember towards the end of the second pint feeling “not right”.  Me being me decided not to make a big deal of it and brush it off.  Apparently that feeling of “not right” was my body having a reaction to the transfusion.  I was building antibodies against the donor’s blood.  OF COURSE I WAS!  WHY WOULDN’T I BE!

Yesterday my nurse said I’m “special”. I’m going to take that as a positive and go with it. From here on out, whenever I need a transfusion I have to go in for labs, go home and wait for the hospital to call me.

Meanwhile, my special blood is driven to a place in Lansing where very smart people try to match it with a donors blood.  I imagine once they think they have a match, my special blood and it’s new friend go through rigorous tests and exercises and questioning.  If they are considered a true match, someone is called and they come with their Prius (again, just imaging) and drive my special blood in a cooler on an ice back to Zeeland where they give my special blood special treatment until my special self arrives for it.

When I get the phone call, I come and get the transfusion.

So today I go back to get my special transfusion.  So tired.

Scale of 1-10

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When you go to a medical facility, hospital, medical office, etc., you will be asked “On a scale of 1 to 10, how bad is your…”  I hate that question.

Last week I had a routine CT scan of my chest, abdomen, and pelvis.  Tomorrow Dusty and I will go to U of M and meet with Dr. Schott to get the results. Please pray the chemo is working and doing what it’s supposed to do.

I haven’t been feeling very well lately.  Over the last few days, I’ve had more pain in my chest making it harder to breathe.  Which means more pain meds, which means more sleep.  I’m more nauseous and my hemoglobin is at a 9.  Nine is the number that sits on the fence.  If I get below nine I need a transfusion.  If I stay above nine, I can avoid one.  I feel terrible for Dusty when this happens because this puts more weight on him to bear.

Please pray for:

  • Our kids.
  • Thanks to Aunt Jana and Jill who are watching the twins and Jen who is watching Brooklyn tomorrow.
  • Dustin as he has a lot on his plate.
  • Safe Travels for Dusty and me.
  • No New Cancer.
  • No More Fluid.
  • Pain Will Be Controlled.
  • Hemoglobin will rise so I don’t have to get a transfusion.

Update

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Thankfully the last two weeks have been “non-eventful”.  No hospitalizations.  No fainting.  No Emergency Rooms.  Just chemo and its backdoor companions – nausea, headaches, muscle/joint pain, skin peeling off my finger tips, exhaustion.  The good news is that I haven’t lost my hair.  It’s thinning, but no major loss.

The hardest thing for me is that I can’t drive.  Nowhere.  Not to shop.  Not to the gas station. Not down the street.  It’s because of the pain pills I’m on.  A necessary evil I suppose.

I can now empathize with the Greatest Generation and a decade or two younger.  People telling them it’s not safe to drive anymore.  Keys taken away; independence gone.  I’m thankful I have Brooklyn to keep me company during the day and the rest of my family at night.

Thank you to those who have brought us meals.  They are delicious and appreciated.  We love the casseroles, but its summer and Dusty LOVES to grill.  Someone recently brought us marinated meat with all the fixin’s.  It was so good.  Dusty didn’t mind for one second that he had to fire up the grill.  I know beggars can’t be choosers so we will gladly take whatever meal you bring us.

Meal sign up sheet: Click here

Thank you for all the ways you’ve reached out to us.  Please contact Dani with questions, comments or concerns:   Dani Keegstra

Prayer Requests:

Lisa VanderZwaag – She’s a year older than me and has been battling BC for a bit longer than I have.  It has spread throughout her bones.  She is flying to Mayo today so they can inject…YES I SAID INJECT…radiation into her body.  They had to get the radiation from a nuclear power plant.  So PLEASE a BIG prayer for her, Robb (her husband) and their three girls.  She doesn’t keep a blog.  She is the most God loving and kindest girls you could meet. Keep hanging on Lisa!  Lisa is the girl standing next to me and Lynette.

Lisa VanderZwaag

My family.   Cancer, chemo and it’s back door friends are hard to deal with day in and day out.  There are days where they will try to suck you in, chew you up to spit you back out and that is hard to fight too.

Fluid sucks too!

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Last week was a difficult week.  After I lost consciousness on Monday, I came home Monday evening.  I was still a little shaky and didn’t feel completely right, but after a 10 day stay at Spectrum I was happy I didn’t have to stay in the hospital.  If you want to know why I lost consciousness, read on.  If you don’t, skip to the next paragraph.

I have always had low blood pressure.  Before cancer, before kids, since I can remember I’ve had low blood pressure.  When I was in Spectrum for 10 days, the nurse would come in my room to take my vitals and dispense my medicine.  After taking my vitals, they would always comment on how low my BP was and ask me if that was normal to which I would say yes.  They would say “then I’m not giving you this drug”.  It turns out “this drug” was Propranolol and it lowers your BP.  Day after day, nurse after nurse, this drug was held back because of my low BP.  However, this was not properly communicated so when they sent me home Sunday afternoon, with a list of discharge instructions and prescriptions Propranolol was on the list.  Like a good patient, I took the medication Sunday night  and again Monday morning.  Monday afternoon I was feeling so strange that I laid down to take a nap.  I woke up to my muscles being very tense and I knew immediately something was wrong.  Thankfully Dusty was home.  He came inside.  Tried walking me to the couch and that’s all I remember.  I woke up on the floor.  He was on the phone with 911.  I spent a few hours in Holland Hospital’s ED where Dr. Loos figured out that it was indeed the Propranolol I should not be taking.  Thank you to EVERYONE in Holland Hospital’s ED.

Tuesday was spent resting.

Wednesday I had my second round of chemo.

Thursday was spent resting.

Friday I woke up at 4 a.m. in a good amount of pain and a hard time breathing.  I got up, took a Vicodin and tried to go back to sleep.  Vicodin did nothing for the pain.  Dusty went to work.  Jana picked up the kids and took them to her house and as the morning went on, it quickly got worse and I noticed the only way to breathe well was to lay down on my side.  I called Dr. VanderWoude’s office, and was eventually advised to go to the ER.  My parents, who were already at the house with me, drove me to the ER.  Sitting in a reclined position in the minivan was hard to breathe.  We pulled up to the ER entrance.  My dad grabbed a wheel chair, I got in it and the more I sat upright, the shorter and shorter breaths I took.   I eventually felt like I was going to faint.  Needless to say, when I told them I can breathe better when I lay down.  They took me back to a room, put me on a bed and laid me flat.  Within a few minutes I was able to breathe better and come back, so to speak.

It was frustrating because my oxygen looked good, BP was good, heart rate was good, labs looked good, EKG was good, X-ray was good, but I knew something was wrong.  It turns out the CT Scan showed I’m collecting fluid in my right pleura or lung area.  It also showed the pericardium is inflamed.  I now of Pericarditis with Pleural Effusion.  Pericarditis, as Dr. Sak explained has a respiratory element to it.  When the lining is inflamed, it feels like sandpaper rubbing the lining of my lungs.  That’s why I couldn’t take deep breaths and was breathing so shallow.

So the window they put in at Spectrum is working.  I, because of the cancer and inflamed pericardium, am producing too much fluid that it is dumping out into my lung causing an effusion in my pleura.

I was admitted to Holland Hospital Friday morning and was kept for two nights while they ran an anti inflammatory drip, kept my pain under control so I could breathe and debated amongst themselves whether to stick a needle in my pleura and aspirate the fluid.

Sunday morning I had another x-ray and Dr. Sak (who is a gem of a doctor), determined that due to the anti inflammatory drip, and comparing the most recent x-ray to the CT scan my fluid had already decreased.  There was also an argument that the fluid was sitting so low in the lung that they ran the risk for puncturing my liver.  Well, NO THANK YOU.  I have had enough for a few weeks.  Where should I sign to get my belongings back?

My life right now is pain pills, anti inflammatories, chemo, lots of rest and so much confusion from what has happened over the last few weeks.  Overwhelmed is an understatement.

My husband should wear a Superman cape.  I honestly don’t know how he did it, is doing it and will do it going forward.  Herman Miller has been so kind and compassionate.  We are so thankful for that.  A big hug to Dusty’s boss Bryan, Sharon and the rest of his team for being so supportive.

Not to sound too cliche, but this has been an emotional roller-coaster.  I could not have done this without my husband, parents, Jill, Dani and Jen.

Please pray.

MRI and Chemo

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On Tuesday (yesterday), Dusty and I went to U of M for a follow up MRI of my brain.  This is the first MRI since the Stereotactic Radio Surgery I had a couple months ago.  Dr. Heth was happy with the results.  One lesion is no longer visible.  The other lesion is smaller.  This is a very early MRI and the radiation will continue to work.  I’m going back in three months to have another MRI.  Our hope is the smaller lesion will be gone too.  Also, there were no new tumors!  Thank God!

Dr. Heth also put me through what I call Brain Olympics.  I sit on the exam table.  First game is Resist and Pull. I put my elbows out to the side like I’m a clucking chicken.  Resist his pull.  Resist his push.  Next is the Finger Flicker.  I cover one eye and stare at the tip of his nose.  He flickers his fingers into my area of vision and I need to tell him when I can see them.  He does this from all angles.  Then I switch eyes.  Fun.  Third is the Leg Lift and Resist.  I put my legs straight out and lift against his strength and resist against his strength.  Fourth is Finger to Nose.  As fast as I can, I have to touch his finger, then touch my nose.  All the while, he moves his finger around.  Then I switch hands.  Fifth is Blinding.  Stare across the room while he shines a light into my eyes.  The light is so bright it is blinding.

He said I did very good and that I could have a seat on the chair.  I did a triple flip off the exam table, stuck my landing, raised my arms in the air like a professional Olympian and had a seat.  Just kidding of course.

I just got back from my first round of chemo.  Jill went with me and I must say it was a pleasure having it done in Holland.  No heavy traffic.  No one driving 60 mph in the left hand lane.  No rest areas.  Saved a tank of gas.

P.S.  I hide behind humor.

This is me and Jill just before chemo started.

Lindy Ver Beek

New Update

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The appointment with Dr. Schott on Tuesday went well.  I am going on a chemo cocktail of gemcitabine and carboplatin.  I will get it every other week.  The good news (because there HAS to be something good) is the infusions will be in Holland at Dr. VanderWoude’s office.  I haven’t been there for chemo in almost three years.  I was hoping to have my first infusion sometime this week, but that didn’t happen.  Hopefully my infusion will happen next week.

I’m anxious to start chemo because I have a significant amount of pain in my neck and chest area.  I think once the chemo takes hold and starts to shrink the fluid around my heart and the lymph nodes in my neck and chest, I will find some relief.  The doctor found my heart rate is running higher than normal for me.  Probably because of the fluid and enlarged nodes squeezing around it.

The side effects are the usual suspects.  Hair loss, nausea, vomiting, loss of appetite, chest pain, fever, chills, cough, sore throat, body aches, light headedness, fainting, severe itching, numbness or weakness, rash, headaches, diarrhea, constipation, drowsiness, low blood counts making me more susceptible to illness.  Ya know…the same ole, same ole stuff.

On Wednesday we are back at U of M for an early morning MRI.  This is a follow up MRI from the SRS procedure I had in March (remember my haute couture halo?).  In the afternoon we are meeting with Dr. Heth, Neurosurgeon, to go over the results and hope that the radiation obliterated the tumors in my brain.

Please continue to pray for our entire family.  It’s hard to get knocked down time and time again.  The only way I can get back up is knowing that people are praying. Please pray for:

– Spiritual & Physical Strength

– Peace

– Chemo to happen this week

– Good MRI results.  Old tumors gone and no new tumors.

If you would like to help in some way, please contact Dani Keegstra, our designated point person.

And so it goes…

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On Tuesday, Jill and I had a delightful trip to U of M for a CT scan of my chest, abdomen, and pelvis. 

Yesterday I emailed Joan, the nurse practitioner, to see if they have the results.  Within one minute of me sending the email she called.  The results aren’t good.  Here is a breakdown of what the CT scan showed:

  • Eight spots on my lungs have grown.
  • Enlarged lymph nodes in my mediastinum thought to be cancerous which is why they are growing.
  • Fluid around my heart and concern that cancer cells are in the fluid.
  • Cancer in the bone of my sternum.

There is no question that I will be on chemo.  They have already narrowed it down to which ones would work the best.  We are meeting with them next week to decide what is best.

This is a lot for us to digest.  We are angry.  Scared.  I don’t feel ready for another fight.  I hate chemo.  Cancer sucks.  It SUCKS!

I wish I had something positive to say, but I don’t.  

Thank you for your kind words, thoughts and prayers.

Please give our family space right now.  We just can’t handle much more than this.  If you would like to help in some way, please contact Dani Keegstra, our designated point person.  

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