‘Internet 101’ teaches not to announce you are going out-of-town, so instead I will announce that we are back-in-town.  We just spent one week on the beautiful beaches of Santa Rosa, Florida.  This was a treat from my parents which was originally scheduled as a celebration after the original diagnosis and treatment were to be over.  We, instead, had to view this more as a refreshing change of scenery, fun for the kids and some concentrated family time.

Spring Break fell right on week 2 of my 3-week chemo cycle – it’s the toughest of all weeks. Jonathan and I drove down two days late because I had to get the shot that increases my white blood cells, and my fatigue hit hard around that same time.  When we made it to FL on Monday, we had such a beautiful condo.  Mom and Dad saved the master bedroom for me and Jonathan – it had a large sliding glass door that opened right onto the balcony.  I could enjoy the ocean breeze and view from bed or from the lounge chair that was just a few feet away from our bed.  It was perfect!  That in itself made it worth the drive!

My contribution as a mom of  3 was very little all week.  When the anemia sets in, my energy drops to an unbeilevable low, my hearts works harder and the simplest things are frustratingly exhausting.  Despite the extra effort,  I was able to sit on the beach one afternoon, enjoy a short stint in the hot tub twice, and go to a couple of our favorite restaurants with beach views.  On Friday evening, Jonathan and I had a date night at the condo – he picked up take-out and we watched the sunset while sitting at our balcony table.

All wonderful things, but all with a debilitating amount of fatigue.  For example, even cracking and eating crab legs was too exhausting (one of my favorite things) – my Dad and Jonathan had to do that for me.  And to feel like you are contributing to the fun of your kids’ spring break is out of the question – the goal is to be strong for them, and just try to build up physically with rest and nutrition.

This is where the mental and sprirtual battle really comes into play – It has been the hardest part of this entire mess.  Your mind becomes so worn down, doubt sets-in, and between the weakness and the pain (muscle and joint from the shot), you start to wonder if the chemo is even on your side.  I’m just being honest, it was really hard to keep it together this week. There’s also the added feeling of guilt because Jonathan and my parents had to pick up my slack as well – and we all know how much a mom contributes to childcare, food prep, mood of the day, etc.  On top of that, I’m so frustrated because I still feel knots on my forehead, which I had hoped would be gone after cycle two. Oh, and did I mention I’m bald? 🙂

I have such tremendous support.  My parents and Jonathan’s parents rotate with the help we need at home.  And between meals being brought over by friends, and many offers to help, we feel like we are so covered. Yet, this is obviously still the most challenging time in my life.

As we were driving home from FL, I felt like I was under a complete oppression – maybe you know the feeling.  It is a horrible place to be.  And next to me is my husband who is trying to drive the car safely and deal with three children arguing over who is touching whom, etc. – you’ve got to be kidding me!!!   I snuggled against my king-sized pillow from home and I just tried to close my eyes and pray and rest.  Both Jonathan and I have had times over the last week where we feel like we can’t breathe – it is just TOO much.  When I finished resting/hiding, I told Jonathan I think I’ve got to treat this like I’m training for a race.  And I mean it on all levels.  Obviously, getting the nutrition in, also exercising whenever physically possible, but above that this is truly a mental/spiritual battle.  It’s the unseen and the unpalpable that are the most insidiously damaging right now.

Jonathan agreed.  We scrounged the suitcases and car for earbuds and headphones to try to get the kids quiet and focused for a few minutes so we could talk – Okay, Soul Surfer is not 3-year-old-friendly, but we were desperate.   Finally we could talk.  Jonathan, who is also feeling like he’s been worn down to his core, referred to the  scripture of putting on the “Armor of God.”  For those who grew up in church, you’ll remember that in Ephesians 6:10-18 God tells us that our real battle is not with people, it’s with the unseen powers of evil.  It then tells us how we are to protect ourselves with His armor.

So, I’ve been reading these verses today and circling, contemplating how it translates into my life right now.  A great tool is to ask a child. I asked our youngest daughter what she can tell me about the Armor of God.  I took notes – they are usually smarter, have more focused faith and are pretty brilliant.  Here is her take on it:  “Well, it’s not actual armor.  It’s what God is.  They are individual pieces of Him put into you as your guard.  For when sin’s bows and arrows come at you, they bounce off and protect you by God.  Even when you get pulled into it – you ask for forgiveness and he always says, “Yes.”

So here I am on a Sunday morning with a lot to train for so that when this battle is over I am standing firm.  I need to intentionally choose each day to read and meditate on God’s Truths in the Bible, so that when the lies and doubts are bombarding me, I have my “armor” on to protect me and guide me through this unbelievably daunting time.  I also need to be persistent in my prayers and stay alert.  I believe this is more than a physical battle I’m in, but a spiritual one as well.  And I need to play offensively.

Please pray for:

• Strength/Fortitude: physical, mental, spiritual
• Healing: please pray that cycle 3 starting on March 31st is the beginning of the end – remission! (I will have a re-staging scan between cycle 3 and 4.)
• God’s glory.  Of course, we want comfort, healing, etc., but above all for the goodness of God to be seen through this trial.
• Protection of our family: patience, energy, quality time with each child
• Praise for all the love shown to us through family and friends, and even those we don’t personally know!

I’m way past due on giving Jonathan lots of public credit and love during this arduous journey. So why not give him some props on his birthday!  I mean, it’s the last year of his youth, so we might as well live it up.  I’ve claimed it for him as his “Year of Fun”, but for some reason he’s thinking it may be more like his “Year of Fatigue”. 🙂 Let me start by saying that we met when he was 20 and I was 22 years old. He really downplayed the age difference of 22 months and 25 days back then. Now he plays it up – he claims I’m a cougar who robbed the cradle. 🙂 No matter how you want to define the large expanse of age difference, he is definitely the man that was meant to walk this life with me.

He is truly my very best friend, the person who makes me laugh the most (and enjoys my humor as well), the provider for our family, my partner in raising our kids and keeping our home, and most importantly the person who keeps our family on track for our spiritual growth.  The Bible tells us that husbands are to love their wives as Jesus loves the church, and Jonathan’s sacrifice for our family is a wonderful taste of the kind of love Jesus has for each of us.  Ok, I’m not saying he’s perfect, but he’s pretty darn close and definitely the person I needed to balance me out and journey through this life with.  Enough sappiness, but I truly adore him and I am grateful to have him in my life!

Update on my treatment: I’ve tolerated this week’s treatment really well! No liver problems, no drug shortages, no hanging out in hallways with small sodas, and only 10 pounds of fluid weight gain versus 17 pounds from my last visit – oh the things your body goes through.  Maybe it’s actually 10 pounds of salad dressing – why they sent me 9 packages of ranch dressing, I do not know.  🙂

Happy Birthday to Jonathan Scheele! I love you more every day! Thanks for loving me young, older, with bountiful hair and as a baldy – you are a wonderful man!

Feel free to comment with birthday wishes – I’ll have him read them!

Well, my hair is officially gone. Once it started falling out, it was only 5 days before we had to take clippers to my head. Thankfully, Jonathan is a clipper pro, and by the time we shaved it off on Sunday, I was in full acceptance. Losing your hair is a messy experience and when it starts to go you might as well aggressively release it. I made a couple of mad dashes for scarves and hats – thank goodness both are popular now, so there are lots of good styles to choose from. Now I have to boldly own this new look, and for someone who likes to sort of blend in, that’s a whole new part of my personality to embrace. Maybe it’s the perfect evolution of my goth motorcycle look. 🙂 Unfortunately, the Vanderbilt wig program is no more, so the wig search will take a little more effort and time, but eventually I’ll have that in the arsenal as well.

So, the girls had a successful debut at the school talent show. They performed well for their classmates on Monday and for the evening show last night.  They are still in those beautiful bold and self- confident years that are fun to witness. I just pray they can hold on to that as they enter the middle school years. We had a tremendous support for them by both family and friends – thank you to those who came out to see them!  We had friends FaceTime it so that I could watch from the hospital, friends who brought flowers, and family that drove from far and near to show their love. I love to see the goodness that God keeps displaying!

In the humor department, Jonathan never fails. We are back at VUMC this week for five nights, and so far so good on my treatment.  Jonathan always entertains the staff with his drawings around the room. Why not decorate the pain chart?  It really helps me to better define my pain on a scale of 1-10. Am I feeling more like a ‘0’ – you know, where I feel jolly and could enjoy smoking a pipe, or is today’s pain better described as a ’10’ where one would describe it as an arrow through the head?  The nurses love it – and have even taken pictures. They say they didn’t erase his similar drawings from our previous room for a long time. They were glad to see the artist in person on our return. 🙂 We just have to make the most of a super-crummy experience.

Once again, thank you for your prayers. I feel so peaceful and hopeful and that must be God’s protection. Also, thank you to Jonathan’s parents for holding down the fort this week – no easy task, and for Judith traveling with my niece and nephew from Atlanta to see the girls and visit me in the hospital. We feel completely loved and cared for!

Now faith is confidence in what we hope for and assurance about what we do not see.  Hebrews 11:1

As expected, it has been a challenging week.  My facial swelling receded over a few days and even though I was tired, I was able to take a couple of  slow walks around our neighborhood. Then on Wednesday, the real fatigue set-in and a tightness which began a few days earlier that encircled my chest was becoming almost unbearable.  On Thursday, I had to go in for labs to check my blood count.  I think the fatigue, pain, fear of what-ifs, and the culmination of months of physical & emotional strain came to a head.  When I went into the doctor’s office my pulse was racing, I thought I might pass out and I could not catch my breath.  I thought for sure something was terribly wrong with me – which only fed the cycle. The nurse thought I either needed a blood transfusion to increase my blood counts or I was having an anxiety attack.

After she left the room, Jonathan said a prayer and I began to calm down.  Later we found out my labs were good and I guess I had just reached a peak of anxiety that I hadn’t reached before.  My pain was most likely from a shot I had on Sunday to increase my white blood cell counts – it works in the bone marrow.  It causes bone pain, and for me apparently it goes around my ribs, up my sternum and back.  Thankfully it backed down a good bit on Friday.

On Thursday evening all 7 of us were at the dinner table.  Our little boy climbed up in my lap.  Our conversation turned to the girls’ upcoming elementary school talent show – they are singing a duet of “Let it Go”. The girls were told that I won’t be able to come to either of 2 performances because I’ll be in the hospital.  It made our oldest daughter cry, our middle child try to comfort all of us, and our youngest child turn to me and ask why I had pink eyes.  We then laughed a little through the tears. Then he put both of his hands on my cheeks – I instinctively pulled them down.  He immediately placed them back on my cheeks as if to say, “Listen.”  And then in a sweet, sincere, 3-year-old voice he said, “Remember no matter what, Jesus is always here to protect you. Jesus is always in your heart.”  I can’t put into words what that meant to me.

Even in the dark times, there is hope and strength.  We also received a huge blessing yesterday.  I’m trying to eat a healthier diet while also packing in calories and protein because my weight has been hard to keep steady.  Jonathan suggested a road trip for some fun food yesterday.  We drove up to Steak N Shake and ordered  milkshakes and hamburgers.  Because I’m so fatigued (can’t stand for long, walk for long, etc.), we decided to find a pretty place to park the car and eat.  Fittingly enough it was at the nearby mental hospital.  🙂  While we were eating, a Vanderbilt financial counselor called.  Finances have been a priority prayer since Jonathan stepped out on his own to begin his own advertising/design business 17 months ago.  We had our taxes done early this year, so that we could submit them to Vanderbilt.  With our new business, all the expenses that come with getting that off the ground, personal itemized deductions and a family of five, etc., we had a shot at getting some assistance with our out-of-pocket medical expenses (that we currently make monthly payments on).  The financial counselor happily told us that we had met the criteria!  The Vanderbilt medical bills are one less burden to have during all of this.  Thank you God!

Today is a good day.  I may be tired, but I feel less anxious, the pain has nearly subsided, my face is 75% back to normal, I have an incredibly loving, supportive family and God is good all of the time!

. . .  “And behold, I am with you always, to the end of the age.”  Matthew 28:20

I’ve been home for three days now.  Jonathan’s mom took great care of our kids while I was in the hospital and now the shift has changed to my parents for the week .  I had a big disappointment on Monday morning. The eye that I’ve been so excited to see re-open the first two days of chemo was almost completely swollen shut when I woke up.  I was so frustrated that I barely got out of bed.  I called the doctor and they recommended taking Benadryl, so I’ve been taking that around the clock. You can imagine how clear-headed and energetic that has made me feel.  Today the swelling has dispersed more across my entire forehead and both eyes. There is even a little bruising – I guess a true battle took place between the Lymphoma and the chemotherapy.

Last night I went to Paris. That’s the name of the girls’ spa business in their bedroom – I was their first customer, so there was no charge, but tips were encouraged.  It was a very relaxed setting where they pampered me with purple sparkly nail polish on my fingernails and blue sparkly nail polish on my toenails. As they gave me a small braid on the top of my head and simultaneously massaged my hands in warm water, I decided to check in on how they were doing. I completely expected them to need some reassurance that things would get back to normal eventually. I told them, “I’m so impressed with your faith and courage during all of this.” Our oldest daughter said, ” I think it is exciting. ” What? ” It is exciting to see what God’s gonna do.” Then our youngest daughter said, “Yeah, and look at Job. He kept having bad things happen to him. His friends told him to stop believing in God but he kept believing.”

Okay. Wow. It felt like I was the one who was receiving the reassurance. That was not what I was expecting at all.  As they finished their spa treatment, they left me to relax with my thoughts and to enjoy their lava-lamp-lighted room wearing dollar-store sunglasses (to soften the light even more) and a pair of neon green fluffy slippers that fit the top 2/3s of my feet. . .

I’ve just met with the Lymphoma doctor, and it looks like I’ll be discharged this afternoon! Home sounds so good right now! My liver enzymes are coming back to normal, the Lymphoma swelling on my forehead/eye area is minimal, my oxygen saturation is back up, etc.  We will do one more test to see if my PICC line is what’s making my heart flutter when I lie on my right side (which I think it is – its placement hasn’t felt right from the beginning).

The team thanked me for making their week more exciting. 🙂 Apparently they don’t normally see nationwide drug shortages, unexpected v-tach possibly related to a PICC line, severe liver enzyme response to commonly used drugs, etc.  We assured them that we bring the party wherever we go.

Please pray for these things for the next two weeks before we repeat the cycle on Monday, March 10th:

• Healthy immune system. That my blood counts don’t drop significantly.
• Lymphoma eradication.  That these medications do the trick.
• Good family time. That this takes the least amount of toll on our family.
• Here’s a crazy one. I seem to be the anomaly in so much of this, would it be wrong to pray for no hair loss?

Thank you so much for your prayers!  Your comments, texts, emails, cards, gifts, etc. are truly overwhelming and heartwarming to us all.  As much as I don’t want to be in this situation, I truly feel God’s love shining through you!!!

On Wednesday night, my pulse started dropping, my blood pressure started going up and it was obvious I was retaining a lot of fluid.  Chemotherapy does all sorts of things to your body, so it is hard for us (family members) to know what’s normal. On Thursday, I had zero appetite and I began to vomit periodically for the rest of the day.  My memory of yesterday is very blurry because of all of the different medications they were giving me to stop the nausea/vomiting and to help me rest. I have vague memories of a chest x-ray, EKG and ultrasound of my liver.  My liver function tests were skyrocketing, so we had to stop 2 of my chemo drugs completely. Of course, my liver response is something unusual (maybe less than 5% of the population – well, that’s par for my course – everything has to be unexpected and worthy of bringing in another specialist).  So, currently hepatologists are running further tests and trying to see why my liver reacted so severely.  I do feel better today. My swelling is down, I took a walk around the floor and even washed my hair (so far, I still have it) :).

Despite all of that, I do have good news!  My eyes are nearly symmetrical and the majority of the swelling of my forehead has receded!  The Lymphoma doctor said, “You will lose your hair, but you’ll have a beautiful forehead.”  Okay, but I’m counting on some hair again one day too. 🙂

Be still before the Lord and wait patiently for him. (Psalm 37:7)

Jonathan here – Today has been a bit rough to be honest. April is sleeping now, and has had pretty bad nausea throughout the day. In short, the negative side-effects have started.

We’re also having issues with her oxygen saturation level, which may still be related to the picc line. The warning chime has made it’s presence know quite a bit today.

So, please pray for her oxygen level to increase. Also, pray for good rest tonight, completely effective cancer-killing medicine and minimal side-effects. Thanks!

Okay, so yesterday wasn’t the best day, but so far today is going much better!

Jonathan and I arrived at Vanderbilt at 7:30 am yesterday morning.  I had labs drawn, a thorough appointment with my Lymphoma specialist to go over the week’s plan, and then headed onto radiology for my PICC line placement – the IV needed for 5 days of chemo infusion.

After the PICC line, we were checked into our beautiful suite-like room. It is really state-of-the-art minus the telephone (see the picture.)  They had to check my heart before the chemo, so I was taken to the 1st floor for a MUGA scan – which checks heart function.  That was a long process, but it got even longer when it was time to head back to my room.  I was warned that “transport” was way behind on moving patients around, and then I was wheeled out into the hallway with a miniature-sized Sprite in hand.  It felt like I was out there for an hour. It was a busy hall and I saw many people passing by.  As each passerby approached, I had to choose whether to acknowledge them or stare at the very small can of Sprite.  I often tried to nod and smile, sometimes I said “hello”, but I can tell you all of the ingredients in Sprite, where it is canned, and what ingredient is responsible for the 2% of your daily allowance of sodium.  🙂 Finally, the kindest man rescued me to take me back to my room.

A little while after settling into my room, my Lymphoma specialist walked in.  She said she was here for a reason (her partner is supposed to be making rounds).  She told Jonathan and me that there is a nationwide shortage of one of the drugs I need, and I will be unable to have it. She had already ordered it twice that day for other patients, but when she ordered it for me – it was out! What? Does this happen? No. This is very very uncommon.  So we had three choices. Don’t start treating. Omit this drug from the prescribed regimen. Or substitute with a similar drug that’s never been tested in combination with the other ones we will be using – so we don’t know the side effects.

What? We were in shock.  Jonathan said, “I feel like we’re about to fly in a Jet and we have to choose which fuel will fly the plane.” Yeah, that’s what it felt like.  We were flabbergasted.

We took a deep breath, said a prayer and called my cousin who is a pharmacist (thank you, Jenise).  We knew we needed to get on with treatment – I literally see the daily growth on my face.  So to omit or replace?  The doctor can’t ultimately decide for us.  We had to sign a consent form for our choice (and the pharmacy needed our order by 5pm if we want to start treatment today). Between our doctor’s advice, my cousin’s advice and a peace within us, we decide to replace with a similar drug (it has been used for 30 years, just not in this combination.)

We finally began the infusion at midnight.  I did fine.  I had some severe restlessness and agitation from the pre-meds of high-dose prednisone and benadryl, but otherwise I can’t complain, and there are drugs to counteract those effects.

I couldn’t ask for kinder, more attentive staff.  Jonathan and my Dad independently asked me today if my eye was opening more – and indeed it is!  Jonathan and I, and my family have even wondered if this medicine substitution isn’t a “God Thing”?  What if this is the best treatment for me?  You never know!  Maybe it is! This whole thing has been covered in prayer by all of you – down to the last detail!

As I said, today is much better.  I’m handling the treatment well, the kids are getting great care from Jonathan’s mom, and our faith is unshaken.  As we drove to the hospital yesterday, the song below was playing which is one of my favorites.  Good motivation to get this going and begin the fight.