31. July 2010 by Lindy.

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

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30. July 2010 by Lindy.

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!

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30. July 2010 by Lindy.

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.

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4. September 2009 by Lindy.

Today is Dusty’s 35th birthday!  HAPPY BIRTHDAY DUSTY! 

This last round of chemo was a tough one.  Starting last Friday I started feeling like I was beat up or in a bad car accident.  Everything hurts; even my teeth.  Today is a little better.  Other than that I’m fine. 

Dusty and I met with Dr. Gootjes this week.  She has been talking to Dr. Hoberman and Dr. VanderWoude about the genetic testing.  I was under the impression that since my genetic testing came back negative that we wouldn’t have to remove my ovaries.  They’re considering removing them because of my survival rate and the triple negative status of my cancer.  They ordered a CA125 blood test to check for abnormalities in my ovaries.  If it comes back that there are abnormalties then we’re removing the ovaries at the same time as my mastectomy.  Either way, I’m having a hysterectomy and a mastectomy at the same time.  I feel like I’m going to be gutted like a fish! 

This is very overwhelming.  Sometimes I feel like I can’t wrap my mind around what’s happening.  I feel like I’m living someone else’s sucky life.   Within the next month or two I’m going to finish chemo, start growing my hair back (yeah!), have a mastectomy, hysterectomy (with possible ovary removal) and begin radiation.  The recovery for the surgeries is 3-6 weeks with no lifting for 6 weeks.  I have two babies.  This is very hard for me to accept.  I can’t lift my kids for six weeks!  My mom, Jill and Kathy tell me not to worry about that because they are giving excellent care to my kids.  I agree that they are - the kids are so happy, but as a mom it’s a really difficult thought. 

I know this sounds crazy, but I can’t wait for my last round of chemo.  I just want the chemo part over with.  Jill says she’s going to bake a “last chemo” cake and we’re going to have a party in the chemo room.  Sounds fun doesn’t it? 

Brooklyn started Kindergarten this week.  It was so strange packing her a lunch and having her gone all day!  She had a great time and seems to be enjoying it.   

Max has finally given up his army crawl and is crawling “normal”.  Samantha is still cruising and crawling.  They’re doing great.  They like to go on walks and sometimes they fall asleep. 

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28. July 2009 by Lindy.

I saw Dr. VanderWoude this morning and the tumor continues to shrink!  She is happy with my response to the chemo.  If she’s happy, I’m happy.  We talked about starting Taxol tomorrow.  Nothing has changed with the original plan.  We’re still doing a dose dense version and there are possible side effects.  She did say that since I had such a terrible time with nausea on A/C that she can’t rule it out with Taxol.  :(  

Some bad news I found out at the doctor’s visit is that I gained five more pounds!  This is not good.  I would like to say it’s because of the steroids.  It’s not.  It’s due to the fabulous cooks who are bringing us food (particularly dessert).  I have a huge sweet tooth and no willpower.  Please do not take my weight gain drama as ungratitude for the food.  We’re very thankful for it.  I just need to show some restraint.  :) 

It feels good to be half way through chemo.  I’m not at the half way point on the cancer road yet, but a very tough part is done.  I’m thankful for that. 

As far as tests are concerned, I still have the genetic testing to do.  This will see if I test positive or negative for a particular gene that makes me more susceptible to breast and ovarian cancer.  I don’t need another MUGA scan for my heart because I tested HER2 negative. 

Tomorrow is chemo and meet my new surgeon day.  It takes about four hours to get the new chemo.  Jill is my chemo buddy (that’s what she calls herself).  She’s going to take me to chemo where we’ll hang out, play some cards, eat lunch, I’ll get some chemo, she’ll get some relaxation and then we’ll go home. 

I also meet with my new surgeon tomorrow - Dr. Liberty-Hoberman.  I look forward to meeting and talking with her about the surgery.

Brooklyn, Max and Samantha had a great time last night at the church picnic.  Brooke came home with some really cool tattoos.  Since when do kids get tattoos at a CRC church picnic?  That would never have happened when I was a kid.  My how times have changed…..now I sound old. 

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21. July 2009 by Lindy.

I made it down the other side of Mount A/C!  I conquered it.  It was quite a trek and I never want to do it again, but I’m glad it’s done.  I hope none of you ever have to experience it.   For those of you who’ve gone through it, we now belong to a sisterhood of strong women! 

Now….on to Taxol.  We’re doing a dose dense round of Taxol.  This means every two weeks, just like A/C.  I keep making the nurses, techs and cancer survivors promise me that Taxol isn’t as bad as A/C.  I’m clinging to hope that I won’t have to deal with nausea anymore.  I just can’t do it again.  They tell me it’s not a cake walk, but I won’t have to deal with nausea.  They say I’ll have pain in my muscles and bones.  Tingling and numbness in my hands and feet.  I don’t look forward to that.  Somtimes people can’t tolerate the dose dense version because tingling and numbness in the hands and feet become progressively worse and never go away.  Let’s hope that doesn’t happen to me.  Maybe God will work a miracle and grant me four pain and problem free chemo treatments.  He can ya know. 

I’ve decided to switch surgeons to Dr. Liberty-Hoberman for the mastectomy.  Thanks to everyone for your referrals.  No offense to Dr. Housekamp, I just prefer a lady doctor.  Dr. Housekamp is a wonderful person and I feel bad for switching, but I gotta do what I gotta do.   

Oh and my Jeremiah verse still pops up time to time in various greeting cards and emails.  I love it. 

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15. July 2009 by Lindy.

I am leaving in ten minutes for my last round of “nasty” chemo.  After today just four more rounds to go.  Then surgery.  Then radiation.  My hope is that the last four rounds are more tolerable than the first four. 

People ask me how long it takes before I feel better and what chemo is like.  I’ll go in today for about three hours while they give me A/C (Adriamycin and Cytoxin), anti-nausea and now potassium (my levels are low on that).  Tonight it will feel like the beginning of the flu.  I won’t feel good.  I feel like it’s getting worse.  Tomorrow is bad.  Friday is awful.  Saturday is horrible.  Sunday is unbearable and also when I reach my peak.  Monday is horrible.  Tuesday is awful.  Wednesday is bad/okay.  It’s kind of like climbing a mountain.  Then I usually have a week of okay days.  The nausea is usually tolerable.  It’s just pain and aches everywhere - even in my bones.  That’s what going through A/C is like for me. 

I hope to find out today that my tumor has shrunk even more, when I can start the last four rounds and when surgery will happen.  I’ll let you know what I find out. 

Thank you for your communication and prayers.  God has been doing great and awesome things for our family.  He provides in every way. 

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1. July 2009 by Lindy.

Our heartfelt condolences go the Wolters and Grassmid family.  Delia Wolters put up a strong and brave fight with cancer.  She went to her heavenly home last night.   Please pray that peace, rest and understanding will find Clarence, Steve and Marian Grassmid’s family and all of Delia’s loved ones.   We were so sad to hear the news.  We were seeing Delia quite a bit at the Cancer and Hematology center and she looked so strong.  I was hoping we would see her smiling face at church again.  She was such a wonderful and kind person.  She will be missed. 

________________________________________________________

I saw Dr. Edlund today.  He’s the radiation oncologist.  I like him.  He was good.  I’m going to have six weeks of radiation everyday (M-F) after surgery. 

Did you know I get tattooed for this?  I had no idea.  They’re just tiny little dots that look like freckles, but I did not know that!  The dots are to help them align lasers on the machine.  I took pride in not having a tattoo.  Now I think I should get a tattoo.  One that I choose.  One that I want.  This goes back to the control thing….. can you tell?

Since radiation is happening after surgery, I won’t have it for a few more months.  It’s good to know what the plan is. 

Chemo went well today.  They got my port on the first try.  They had difficulty because they couldn’t get blood flow so they had to “draino” the port.  The draino made it work right away so they could proceed with the meds. 

Now it’s the calm before the storm.  I’m waiting for the nausea to hit.  I feel okay at the moment.  I’m taking it five minutes at a time tonight.  Right now I’m good.  Five minutes from now, who knows.

One more round to go!

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10. June 2009 by Lindy.

Today was the first day I did not take anti-nausea meds!  Yea me!  The day started out a little rocky, but turned around for the better. 

The prayers of God’s people are working.  I know it.  I can feel it.  I am pushed forward and carried through every day by your communication (let this be a notice that from this point forward I’m going to refer to emails, cards, calls, messages, texts, etc as “communication”).  The bible verses you’re giving me are so fitting.  By the way, my Jeremiah verse, yes I’m claiming it as mine, surfaced again in someone’s card this week.  Cool huh. 

I went to see Dr. Porter today and get my labs drawn.  Dr. Porter is a medical psychologist.  I have to start by saying I’ve never been to a psychologist before, but he’s not the “tell me about your childhood” kind of psychologist.  He’s more “so how’s the nausea going?” kind of psychologist that specializes in cancer patients.  He was good.  He gave good suggestions.  He suggested keeping some things as routine as possible so I don’t feel like cancer has taken over my entire life.   While he kept talking my mind started wandering about how routines and twins don’t always mix, but whatever.  I got his point. 

As far as I know my lab work was good.  I was a little concerned I was anemic, but they could tell me within a couple minutes of drawing that I’m not.   This is an answer to prayer too.  Last week I was slightly low and I was a little worried that a blood transfusion was in my future.

Dusty is doing well with his new role at HMI.  He seems very busy and happy with it.  Brooke is doing great and had a good time today at the Farmer’s Market with Avery and Bea’s (grandma Vander Zwaag).   Although she cried during the bee keeper demonstration because she was convinced the bees were going to sting her (sorry Avery - girls cry).  It was nothing that a giant sugar cookie couldn’t fix.  Max and Samantha had a typical day in the life of a 7-month-old - dirty diapers, veggies, fruits, bottles, playtime and naptime.    And now bedtime. 

Have a great night!

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4. June 2009 by Lindy.

Dr. Housekamp, the surgeon who performed the lymph node biospy and Power Port surgery, called this morning.  He said it was a difficult lymph node surgery because the lymph nodes were really hard to get to.  He did a lot of digging because they were quite deep.  He removed six lymph nodes and two of them came back with cancer.   They were hoping to do a MAC sedation which makes you kind of out of it and you won’t really remember it, but half way through the procedure they had to do a general.  I’ll spare you all the technical information, but they did a good thing by knocking me out completely.  Thankfully my throat doesn’t hurt from the breathing tube and I had no side effects from that. 

Dr. Housekamp (surgeon) is going to talk to Dr. VanderWoude (oncologist) about what the next steps are.  He said she may want to do a PET scan to see if the cancer has spread anywhere else (I thought that’s what the CAT scans were for, but what do I know).  He also said she may want to do radiation in my armpit after chemo.  We will wait and see. 

Dr. VanderWoude hasn’t staged the cancer yet because she was waiting for the lymph node biopsy results.  Once I know what stage the cancer is I will pass it along to you.

Please pray that I will not lose my fighting spirit.  When I receive news like I did today about the lymph nodes, I find myself wanting to throw up my hands and have a big ol’ pity party for myself.  Everything I do takes energy.  I can choose to use the energy to fight rather than feel sorry for myself. 

God will help me beat this.  We’re going to fight together and win.  He’s got my back.  My God makes the sun rise and fall.  He is huge.  He is larger and more powerful than we can imagine.  He can move mountains.  He saved my little girl.  He can save me too.  Just believe it. 

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