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.
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.
Thank you for making Dusty’s 36th birthday extra special this year.
From decorating his desk at work and posting his little kid picture all over Herman Miller (including bathroom stalls), to making an awesome cake (thank you Joni Gibson), money for dinner, 50 cards, treats, balloons, beer “with roots”, barbie and smurf cakes, 70+ Facebook messages, etc. He was even gifted a special Eames birthday throne (thank you Brian Van Kley).
He had a perfect day. Thank you all!
This week we’re going to Mayo in Rochester, MN. Thank you to everyone for your advice and help on getting there. Thank you to the people who are staying at the house taking care of the kids while we’re gone.
I wish I could say I were excited and hopeful about the trip, but my guard is up so I’m scared, nervous, worried and anxious. I hate feeling this way. I want good news.
This is also Brooklyn’s first week of school. New school, new grade, all day. It’s a big deal and I’m not going to be here for it. You can probably imagine the guilt.
Please pray for:
Dusty is not your typical adult when it comes to birthdays. Oh no. He doesn’t pretend it’s not coming. He doesn’t dread turning another year older. He doesn’t deny that it’s his day. He LOVES his birthday. He looks forward to it. He reminds me weeks in advance when his birthday is coming. If he receives a birthday card in the mail before his birthday, he will save it to open on his birthday. He loves his birthday.
Dusty’s big day is this week Saturday, September 4. He is turning 36. I’m writing this because I want to make his day great. If you see Dusty between now and then, please tell him a big Happy Birthday and give him a slap on the shoulder or a great big bear hug or something.
Thank you.
No one knows when their last breath will be taken. Not many people are given a time frame on their life. When you are given a time frame, it makes things different. Everything is different. Every moment of every day is different. I look at my kids differently. I’m incredibly thankful for the time I’ve had so far with them. I wonder how much longer I’ll get? My hope is that it’s many years.
The time I spend with Dusty is different. Not that he ever got on my nerves, but let’s say if he did occasionally, he doesn’t anymore. I’m just happy to be with him. Things don’t annoy me anymore. The moments I spend with my parents, family and friends is different. I soak all of it in. I’m grateful for it.
I recently received a letter from a man at church who lost his wife to cancer. I don’t think he’ll mind me telling you that his prayer to God was he would give them five more years. Five more years. God gave them five more years. She was a wonderful woman.
I’ve been given a year, but the five years has been on my mind. Then I think to myself that I want more than five years. I want way more than five years. How much is too much to ask? In five years Brooklyn will be almost 12. Max and Samantha will be almost 7. They have too much life ahead of them to spend without a mom. Scrap the five years.
Do I ask for ten years? That puts Brooklyn at 16 (almost 17). By then she’ll have survived middle school and have been through driver’s training. Maybe she’ll have been through her first heartbreak (hopefully not) and had her first fight with her friends. Max and Samantha will be 11 (almost 12). I’m terrible with knowing what grade they’ll be in, but I would imagine it would be around the sixth grade. Just beginning those ever changing middle school years. They need a mom for this. I need to be here. Scrap the ten years.
How much is too much to ask? I know that my days are numbered as are the rest of my family’s. I believe I need to rest in God’s undying love for me and my family. I know that His will is perfect. I need to trust and be still.
If you’re wondering, I’m not angry at God. I haven’t been angry yet. I’m tired. I’m sick of it. I’m sad that he chose this daughter of His to have struggles. I do wonder why. Why couldn’t it have ended with breast cancer? That would’ve been enough for me.
I never saw myself as a weak person, but that’s how I feel most days. I don’t want to be the girl with reoccurring terminal brain cancer. The one people give head tilt looks of pity to. The one that all of these AWESOME people are organizing fundraiser events for. I can’t believe I’m that girl. I’m the girl who since on steroids for my brain swelling has gained another 10 pounds. I am currently 35+ pounds beyond where I normally am. I look in the mirror and don’t recognize myself. I’m heavy. My head is burnt from radiation and starting to peel. Did I mention that my reconstruction surgery had to be postponed? I barely recognize myself. A tiny fraction of what I looked like 1 1/2 years ago is still there. That’s hard.
I want to be the girl who organizes the fundraisers for someone else. Who donates the $20.00 for someone else’s family. Who gives all their pop cans and returns all of them (thank you Jen) to give the money to someone else’s family. Who organizes a bake sale, jewelry show, repairs their van and so much more for someone else’s family. It is so humbling to be where I am. I am so thankful for everyone who has stepped forward and is working on or has already helped our family. Thank you.
I’m also scared. Scared for what Mayo Clinic and Duke will tell me. Will they offer a new treatment? Will they offer surgery? What if they tell me they have nothing for me? Fear is from my enemy. I know that God is better than any doctor on the face of this earth. He is the only one who can cure my cancer. No one else. He’s it. I need to trust that. Put my fear away and rest in God.
On a MUCH lighter note. I can’t end this on a ranting pity party for myself.
I did have a great Saturday making salsa with my friend Jill. We planted some (by some, I mean at least 10) tomato plants in my parent’s garden and we have tomatoes coming out of our ears. So we made the Bazan’s Sweet Salsa recipe (thank you Lindsay). If you want it, I don’t think she’d mind me giving it to you. It was easy and it’s really good. It’s sweet though, so it’s not a traditional salsa if that’s what you’re looking for.
I am done with radiation! Yesterday was my last day and it felt so good to be done. No more crazy mask. No more burn on my head. No more sore ears. We won’t know for two months whether the radiation reduced the tumors or not. Even though I’m done, it continues to work. That makes me feel good, but the bummer is the side effects are still in place for that time. So I’ll deal with the fatigue, but I’ve done that before.
I’ve noticed my memory isn’t what it used to be. I tend to get confused with days and dates, but hopefully that will improve.
I have an appointment with Mayo Clinic on September 8. Thank you to Randy and Gail Pugh for offering to fly us there and back. I’ve spoken with Gail on the phone and through email and they are like angels sent from above. I look forward to meeting them.
I also have an appointment with Duke University on September 13.
Once I’ve met with both places and have their suggestions I plan on meeting with Dr. VanderWoude (oncologist) to help decide what I should do.
The kids are doing great. Poor Max is so confused by my head. Whenever he sees me without something on my head, he says “mama” “hair” in a questioning voice and has to touch my head. Then he’ll walk to a picture of Dusty and I, where I have hair, and say “mama” in a more definitive tone. My hair should start regrowth in about two weeks. I figure in about four to six months my hair will be the way it was before it fell out…again.
Speaking of hair, Samantha’s hair is getting so thick and it’s growing! For some reason our girls don’t like to grow hair until about they’re about two.
Brooklyn is doing great and continues to have an amazing social calendar. She is having a blast.
I couldn’t have asked for a better weekend at the cottage. Thank you Russ and Rhetha Genzink.
Dusty and I had a great night by ourselves Friday night. We went out for dinner to Hearth Stone. We laughed later because we realized it’s a gas station restaurant. That’s right, we celebrated our 12 year anniversary dining at a restaurant hooked to a BP gas station. In all fairness, you wouldn’t know it was a gas station restaurant until you go down the hill and see the BP is hooked to it. It was good food and we couldn’t complain.
We were given a couple presents from friends to take along. Knowing my enormous sweet tooth, my friend Jill smuggled a Zeeland Bakery Cake (white cake, chocolate frosting on top and cream in the middle – there is no other way) and fake bubbly (I can’t drink on my drugs). Susan Bakker made an awesome appetizer platter for us.
Susan also made a cute little bucket of sparklers, rice krispie treats and fun things for the kids. Brooklyn decided to try selling the Rice Krispie treats. What a little entrepreneur! Wonder where she gets that from?
We did everything we hoped to do. We played in the water, went on a boat ride, rode the Sea Doos (Brooklyn’s new favorite), caught a fish, watched a sunset, roasted s’mores, ran around with sparklers, ate too much food and had a great time with the entire family.
It was so hard to leave on Sunday because it meant coming back to reality. I am so thankful that for one weekend I could focus on something other than brain tumors.
I watched my kids play in the water. Discovered Brooklyn cannot go fast enough on a Sea Doo with her Uncle Clair. Realized Max thinks he’s a big boy and wants to drive a Sea Doo too (just like Uncle Clair). Samantha loves the water. Brynn (my beautiful newborn niece) is such a sweet and awesome baby. Although…word in the cottage was that she didn’t sleep well and gave her parents and grandparents a rough night. Somehow my family slept through the whole thing!
I’ll write a new posting to fill you in on what’s to come with me from a medical standpoint.
I wanted this posting to be all awesomeness.
Where to begin. Monday night was a memorable night shopping with Brooklyn and my mom. We had a great time. Thanks again to Lilly’s limo and the Meyaard family who provided this trip for us.
God pulled through for me on Monday. As you know, Brooklyn wasn’t ready for my hair to fall out so I had one simple request – please let my hair last through our shopping trip. I put a helmet of hairspray on- it could’ve been bullet proof. By the time the kids were in bed, however, I was pulling clumps of it out. It came out quickly. I’m officially bald….again.
Disclaimer: If you drop by my house unannounced (which is fine), but you see me, rush, dash, or army crawl in an effort to be avoided, it’s because I’m frantically looking for a headscarf to put on my head. I will not answer the door without one. It’s the vanity in me. So please pretend you don’t see me flailing around throwing things on my head.
Medical Update.
Here is a call I received today:
Ring Ring
“hello?”
“Dr. Frieling” (monotone)
“excuse me?”
“Dr. Frieling Duke University” (he was speaking fast and monotone so I think that was his name)
Papers shuffle “I’m calling for Melinda Ver Beek (that’s me).”
“That’s me”.
“Yes, I’ve looked at your case and we can’t help you. We only work on primary brain tumors, not tumors that have metastized. Sorry.”
“So you’re telling me Duke is out of the running?”
“No, my department is out of the running. Call Amy Blackwell – here’s her number”.
Peach of a man. I mean really. I bet he’s a great brain surgeon.
I called Dr. Blackwell’s office and was more encouraged speaking with her staff than the brain surgeon. According to her staff, her research is in breast cancer that has metastized. If my case meets her requirments, I will be considered top priority and she will overboard her clinics. Right now, I’m transferring my medical records to Duke to find out when I can be seen. I have a tentative appointment on September 13, but she may want to see me before then.
I’ve also been in contact with Mayo Clinic. Currently a case worker is looking over my file and I expect to hear from them by the end of this week.
Lots of things going on and much more to be thankful for:
Thank God for medicine.
Thank God for the amount of money that’s been donated to us. This will be used wisely and toward all medical expenses.
Thank you for the prayers of His people. I feel an intense peace that has also filled our home. Our attitudes are different towards eachother and there is a lot of happiness despite the circumstances.
Please pray that this weekend goes well for me and my family. I’m a little nervous about how I’ll feel physically. My expectations are so high that I don’t want to let myself down. Please pray that I don’t have headaches, nausea, or any complications. I am excited to spend time alone with Dusty and then with the rest of the family. I can’t wait to see Max and Samantha splash on the beach and put sand in eachother’s hair. For Brooklyn to take her first sea doo ride and to cruise around on a Pontoon boat. God is always good.
BIG THANKS TO:
My radiation drivers. It’s a treat to chat with someone each day.
Awesome Ironers. This has taken a big load off our shoulders
Lawn Mowers. Thank you Nykamp’s for mowing our yard.
Random Acts of Kindness people: Cookies, Captain Sundae Coupons, Bars, Meals, Crafs for Brooklyn, Fun outtings for Brooklyn, scarf donations. The list goes on and I’m sorry if I forgot to mention you.
For The Love Of Lindy – Thank you to the organizers of the various events. I know this doesn’t come easy and much time and effort has put into it. It hasn’t gone unnoticed. I appreciate and love you all.
Our 6 year old daughter Brooklyn, Lindy, and Grandma Loie aka “Bees” went school shopping last tonight in style, thanks to our friends at Lily’s Limos. Check out the video below for a short glimpse into the experience they had in the stretch Hummer Limo.
Thank you Steve and Julie from Lily’s Limos for making this year’s shopping trip extra memorable! It was a special time together they will not forget.
We had a blast. It was the best shopping experience and one we will always remember. Thanks for the great memories Steve and Julie!
It’s happening. My hair is falling out in clumps. Yesterday Samantha was sitting in her high chair eating a snack. I bent down next to her to pick up food off the floor. She decided to reach out and grab my hair. In doing so, she managed to pull a hand full of my hair with her. It’s not that hard this time around. I feel like I’ve prepared myself to lose it again and my prayer is that this time it grows back. They say with radiation it takes longer for it to come back compared to chemo and it may not come back at all. Small worry in the grand scheme of things.
My goal remains the same: Stay alive. Raise my kids.
Thankfully I passed my old scarves onto a friend who went through chemo last summer and she kept them. Not only my scarves, but she passed on a bunch of new scarves too. Thank you Amy! This morning Brooklyn and I washed the scarves and hung them on the line to dry. They looked so pretty I had to take some pictures.
The scarves have accumulated from friends and family and there is even a scarf that was given to me by a dear friend – Anita Geurink who brought it all the way from Beautiful Gate in Leshotoho, Africa! It’s the blue scarf with cones on it.
