I developed lymphedema on my back and part of my upper right arm because of the removal of my lymph nodes in November 2009.  The fluid doesn’t know where to go and starts to collect.  I went to physical therapy for this and she suggested I get a pump.  Thankfully our insurance covered this pump and I now get to wear it every day for one hour. 

It comes in three pieces.  One for my leg, one for my trunk and one for my arm.  They attach to eachother and have hoses coming out of them going into a machine.  The machine pumps air into the suit to push the fluid around to lymph nodes that I do have.  It works really well!  After one hour the fluid has gone down quite a bit. 

The twins are scared of it.  Samantha cries and says “mama off, mama off”.  It makes Brooklyn cry because I have to wear it laying down and I have restricted movement and it just looks kind of scary.  Max gets annoyed because mama’s not playing with him for a while.   I must admit, it’s not very becoming.  (excuse the messy house) 

Dusty and I are going to U of M on Thursday.  I’m always anxious when these weeks come.  I just pray that everything turns out okay. 

I’ve been tapering off my steroid and I can tell my adrenal gland is being lazy to start working again.  Please pray that I can continue to taper off and my body will start to work like it’s supposed to. 

Thank you for your wonderful emails and cards. 

Happy New Year!  See ya later 2010….hello 2011!  A year ago I was so happy to put 2009 behind us and now I’m equally as happy to put 2010 in the history books.  Just when you think your life will be smooth sailing…

We had a great Christmas.  Brooklyn was so excited for her presents this year.  Max and Samantha were happy to rip the paper and see what’s inside.  They got many fun presents.  It was nice to see our families again too.

Last week Monday we went to Great Wolf Lodge with two other families.  It was a riot. 

At first I wasn’t going to participate in any of the water activities.  First of all, I didn’t have a swim suit and second, what was I supposed to wear on my head?  Jill talked me into getting a mastectomy suit (Lands End has great ones) and when I brought up my head or lack of hair, she said “don’t worry Jill and I have that covered” (I have two friends whose names are Jill).  They bought me and themselves retro style, flowered swim caps.  Jill B was wearing black.  Jill G was wearing hot pink and I wore blue.  It was so funny.  People at the waterpark loved them.  We got a lot of attention!

There’s a slide at the park that three people can ride down together.  The Jill’s and I climb the stairs to the top.  Wait in line and finally it’s our turn.  There we stood.  Ready to gracefully maneuver our way onto the three seater tube.  The boy attendant working the slide turns to us, looks us up and down and says “there is a 500 lb weight limit”.  We were shocked.  Is that a fat joke?  Are you talking to us?  I think all three of us had our jaws on the ground.  Jill B broke the silence by saying to us “Get in!”  We plopped ourselves into that tube so fast and laughed the entire way down the slide.  Who does that boy think he is?!  500 lbs my foot. 

Overall, I feel better than a did a couple months ago.  I’m not back to my old self yet and I can’t wait for that to happen.  The hardest question for me to answer is “how are you feeling?”.  I can answer it by telling you how I feel at that moment, but it fluctuates daily and sometimes hourly.  It’s really tough to make plans or appointments because I feel bad cancelling and I don’t want to cancel because that means cancer is winning.  I won’t let it win. 

I’m still taking Prednisone, but I’m tapering off it.  Hoping my adrenal gland won’t be sluggish and will kick in. 

Thank you for your Christmas cards this year.  It is so fun to see everyone’s family pictures. 

I am going to see Dr. Schott at U of M next week for a routine check up.  Please pray we don’t find any lumps or bumps and that my lab work looks good. 

Thank you for your prayers and I ask that you continue to pray for:

• My cancer to disappear completely and forever.
• Brooklyn, Max and Samantha as they deal with having a sick mom.
• Dusty being superdad.  He’s been on this rollercoaster with me and although he doesn’t physically feel what I feel, he has to carry quite a load.
• Everyone who battles and suffers from an incurable disease.  We need endurance, strength, positivity and love. 

I had a voice mail on Wednesday from U of M.  It was one of those voice mails that immediately put me in a panic.  It was the nurse practitioner, Joan, from Dr. Schott’s office.  She said they got the final report back on my CT scan and she would like me to call her back.  So I did. 

While I was holding for her I began getting really angry.  Irate.  How could this be happening?  Dr. Schott said everything looked good on the CT scan last week?  What is wrong with my CT scan?  This is not happening.  I’m barely back on my feet and now there is a problem with my CT scan. 

Joan got on the line and explained that the radiologist saw a “spot” by my right ovary and a “spot” by my left ovary.  I had a hysterectomy, but it was a partial hysterectomy.  Meaning…they didn’t take my ovaries.  She said not to worry (IMPOSSIBLE) and that I need to get an ultrasound by my local doctor to find out what the spots are.  They make her and Dr. Schott “uncomfortable”.  Uncomfortable! 

I hung up the phone, had a panic attack, called Dr. Taylor’s office and begged them to get me in ASAP.  They were able to get me in yesterday.  I didn’t tell many people because I was hoping and praying that the “spots” were nothing. 

Dusty and I went to Dr. Taylor’s offce and the ultrasound proved that the “spots” are cysts on my ovaries.  No big deal.  Thank God.  I cannot explain to you the relief that came over me when I heard that. The best site where you can buy cialis online from any device: computer, smartphone or tablet. We have great prices that will please you. We are always in touch and happy to every customer! Click right now!

Joan’s phone call reminded me, again, of how your life can change in an instant.  One phone call can stop you in your tracks and turn your life upside down.  Forever changing everything.  Nothing being the same again.  You never forget where you were, what you were doing and who you were with when those phone calls come.

Praise God it wasn’t one of those phone calls.  Praise God the “spots” are only cysts.  Praise God my disease is still stable.

Praise God.

It’s been a LONG day.  Dusty and I left the house at 6 a.m. for U of M. 

Here is a breakdown of our day:

At 9 a.m.  I had an injection for my 1 p.m. bone scan.  She put an IV in me and kept it there for the MRI and CT scans later that day.  Needles don’t scare me, but since my lymph nodes were removed on my right side they can only draw blood on the left.  I’ve been poked so much on the left side that I’ve developed scar tissue around many veins which makes these pokes a bit more painful.   

At 10 a.m. I had an MRI with contrast.  Despite the arcade noises blasting in my ear I was able to snooze for a minute or two. 

At 11 a.m. I had to start drinking a nasty “smoothie” for my CT scan. 

At 12 p.m.  I had to drink another “smoothie” for the CT scan of my chest, abdomen and pelvis.  Then my IV was removed. Yea!

At 12:15 We went to the cafeteria because I wasn’t allowed to eat for six hours before my CT scan.  I bought a margherita flatbread pizza.  Apparently the chef’s at U of M like to douse the pizza in red pepper flakes.  So much that my lips were burning. 

At 1:00 I had a bone scan.

At 1:30 I ran into the nearest bathroom and vomitted everything out of my system.  Either because I forgot to take and bring my anti-nausea pills, or because I hadn’t eaten since last night.  If you read everything up until this point, you’ve read that I was injected with dye for the bone scan, injected with contrast for the MRI, drank two of the most disgusting “smoothies” for the CT scan, was injected with contrast for the CT scan and my body decided to rebel. 

Poor Dusty was stuck carrying my bag and purse from that point forward.  Such a good man.

At 2:15 I had my blood drawn.

At 2:30 I ran into the nearest bathroom and vomitted AGAIN. 

At 3:15 I arrived on Dr. Schott’s floor where I was given a pink hospital pan/bucket to vomit in.  The nurse was such a blessing.  She took pity on me and put us in a room with a couch, three warm blankets and a pillow.  I fell asleep.  It was fantastic. 

At 4:00 we met with Dr. Schott.  Great news is the scans came back clean.  I show no signs of new cancer anywhere in my body.  The CT was clear (stomach, ovaries, liver, kidneys) and the body scan was clear too!  My bones do not have cancer in them either.  Praise God!  The MRI showed my brain tumors continue to shrink.  I was hoping they would be gone, but shrinkage can be a good thing. 

The last time I saw Dr.  Schott I had purple blotches on my back.  They never went away and she diagnosed it today as lymphedema.  Typically people show lymphedema in their arms, but staying in true out-of-the-box Lindy fashion, I have lymphedema in my back.  Secretly I’m relieved it’s lymphedema.  I thought I was getting back fat! 

At 4:30 we left and had a drive home that was rough since I wasn’t feeling well.  Thankfully they let me keep my little pink tub/bucket. 

Thank you for your prayers.  I felt so much peace today.  I’m so thankful no new cancer was found and my brain continues to heal.  God is good and so are his people!

We had a great Thanksgiving this year.  Despite an illness that is running through our home, all five of us were able to make it to not only to one, but two Thanksgiving parties!  It was great to see our family.  We were at Dusty’s dad’s house for lunch.  It was a great time, but it was different this year without his mom.  It felt like someone was missing. 

Things have been going okay for me.  I’m having a day or two a week where I feel pretty good.  Other days I’m anywhere from uncomfortably nauseous to horribly nauseous with a headache sprinkled here and there and a good dose of fatigue. 

I’m particularly anxious right now because I have multiple appointments at U of M on Thursday for scans and a meeting with the doctor.  I’m having an MRI of my head,  CT scan of my chest, abdomen and pelvis and a bone scan.  When those are complete I meet with Dr. Schott.  Please pray that all the scans are clear, show no signs of new cancer, the brain tumors are gone and that I will have peace about this appointment.

This holiday season seems more special than ever.  We have so much to celebrate and give thanks for.  I cherish every moment with my family.  On the Ver Beek side of the family instead of the adults trading gifts, we give money to a charity or organization.  This year we purchased two goats and four chickens for families in Africa through World Vision.  I can honestly say that is the craziest Christmas gift I ever gave someone.   

We’ve been contacted by a few organizations about bringing our family a holiday meal or toys for the kids.  We are very blessed with Dusty’s full time job and insurance.  We do not need holiday meals or toys for the kids.  The money from the fundraisers people so graciously organized for us, is being strictly used for medical expenses that insurance does not cover.  We are able to provide for our family and appreciate being thought of.  If you wanted to bring a toy for the kids, please donate a toy to Toys for Tots or a similar organization. 

I hope you had a good Thanksgiving too. 

Stable.  That’s what they call my cancer.  Stable.  I feel everything except stable.  Sick, tired, nauseous, sad, scared, annoyed, angry, grateful.  What’s stable?  Yes, I meant to write grateful because in the midst of misery I’m thankful for a lot of things.   

I went to U of M last week Thursday and met with Dr. Schott.  The good news is that we clarified my adrenal glands will work they are just sluggish and that’s why they put me on Prednisone.  Just when I think I’m done with steroids, I get another one.  It’s working though, so I’m thankful for that.  Everything else checked out fine.  No new lumps or bumps were found.  Lab work looked good.  The bad news is that we can’t fix my nausea.  I feel like I have the stomach flu everyday.  Some days are better than others, but at some point during the day I feel really sick.  We’re trying a new medication for it. 

I’ve said it before and I’ll say it again – I’m sick of being sick!  Some days it’s more a mental fight than a physical fight.  Either way, it’s hard and I’m tired of it.  I just want to feel better. 

I return to U of M on December 2 for scans.  Please pray they don’t find cancer anywhere in my body.

If I don’t write again, I wish everyone a happy and blessed Thanksgiving.  Gobble gobble. 

For I will restore health to you and heal you of your wounds. – Jeremiah 30:17

Prayer Requests:

• Returned strength and energy
• No more nausea
• The scans on December 2 are clear
• My family – Dusty, kids, our parents, siblings, etc.
• Thanks for our support system. 

The last couple weeks have been miserable.  I didn’t feel well.  I couldn’t eat.  I was running a low grade fever.  I felt nauseous all the time.  I had no energy. It took everything I had to do anything. 

Last Friday, after consulting with my favorite nurse at U of M (Sarah), I went to Spectrum’s ER.  Jill was kind enough to drive me there.  The down side is that Jill doesn’t work at Spectrum so I didn’t get the star treatment like I do at Holland Hospital.  I must say we arrived at the perfect time because we could walk right in.  They took an MRI of my noggin and found no new activity and the other tumor spots were non existent.  Praise God!  I called Sarah at U of M the following Monday to find out if this means I’m in remission and it doesn’t.  It means my disease is stable. 

I still felt sick this past week and began vomiting again with low grade fevers, slight headaches, fatigue, etc.  On Friday I called my favorite U of M nurse and she insisted that I come to their Urgent Care.  Jill and I hopped in the car and off we went.  It’s a 2 1/2 hour drive, but an easy one.  It was fun to go with Jill too.   She has quite the singing voice. 

When we got there I had a blood draw.  It was a type of draw I hadn’t had before.  Lots of blood and they had to draw from two different sites.  Then I went for a chest x-ray.  Finally up to the infusion floor where they pumped me with two bags of IV fluids and some meds.  The best news of the day is that the blood work showed what was wrong with me!  I have adrenal insufficiency.  They adjusted my meds, gave me new ones and I feel much better already.  Thank God!  I can’t completely describe what it feels like to have that insufficiency, but at times I felt like I was suffering.  It’s horrible.  I’m so thankful God put the right people in front of me to urge me to get help (Dusty and Jill), led me to the right place (U of M), ordered the right tests (lab work) and presented the diagnosis to the PA.  God is awesome.  Oh and the chest x-ray was fine. 

So that was my life the last two weeks.  Not fun.  Miserable. Challenging.  But I got through it and feel so much better!

I was happy to make it to Crazy Horse.  That was a great night.  To see all those people and the kindness of the owner, manager, waitstaff and everyone who works there to donate their time and wages.  It was amazing.  Thank you to everyone who came, ate AWESOME food and had a good time.  It was nice to see some of you. 

God Bless! 

P.S.  I’d like to give a special shout out to Mr. Lowe’s seventh grade class! 

It was nice not having a doctor’s appointment for two weeks.  Yesterday I snapped back to reality.  My dad and I had a fun road trip to U of M for my first meeting with Dr. Schott.  Just so you know, you will never be starved for conversation when you’re with my dad.  He knows a little bit about everything (except computers – he could identify one, but not know how to turn it on).  We talked about many things and it was great to spend that time with him.  I even had a small lesson about chopping corn. 

Dr. Schott is a lovely woman.  I will spare you all the details of how we came to the treatment plan, but this is what it will be.  I am going back next month to monitor my headaches and my orthostasis (new development for me, but not a big deal).  I had my labs drawn yesterday so I will get the results of those as well.  In December I will have an MRI of my head, body scan and CT of my abdomen.  We pray that no tumors/cancer is picked up on the scans and the brain tumors have disappeared.  We’ve decided to hold off the Xeloda chemo pill at this time.  Not only because I don’t show evidence of cancer anywhere else in my body, but also because I finished whole brain radiation 1 1/2 months ago and finished Gamma Knife two weeks ago, so I need to fully recover from those procedures until we begin anything new.  I need to regain my strength, let the brain swelling go down and recover.

Speaking of swelling, some of your jaws may have hit the ground when you saw me in person or in pictures lately.  I don’t look like myself.  My face is very round and I’ve gained a lot of weight.  The doctor’s tell me this is normal and because of the Dexamethasone (steroid to keep the brain swelling, headaches and nausea away) and it’s just a nasty side effect from it.  That being said, I thank all of you for the delicious baked treats and desserts you’ve brought my family lately, but in an effort to be healthy, I ask that you bring your wonderful treats to your neighbors, friends or family. 

Well…I’m off to buy fat pants.  Wish me luck.  🙂