I'm sorry, Rick Springfield...maybe next time...

Sorry, Rick...maybe next time...

How quickly things can change! When we last "spoke" I was looking forward to bouncing back after one more rituxan infusion--setting goals, signing up for races, making training plans...

BUT LUPUS DOESN'T MAKE PLANS

and

LUPUS DOESN'T PLAY NICE!

It all started on June 26...well, actually it goes back a little further than that. I've not been feeling great for a while now. After having my gall bladder out at the beginning of May, I came down with pneumonia, and spent more time in the hospital. Then, lupus started to flare, with high fevers, pain, headaches, severe diarrhea, dizziness, and other fun symptoms. I had the first of two rituxan infusions on June 16. The second was scheduled for June 30. Usually I am down and out for about a week following an infusion, and then I slowly start to feel better over the course of another week or so. This time, however, I just kept feeling worse and worse, with absolutely no energy at all. I just thought it meant the rituxan was working extra hard. I had a routine monthly CBC (complete blood count) scheduled for June 26. That was also the day we were planning to go a Rick Springfield concert. We also had tickets to see Journey on June 27. I had planned to wear masks, take my cane, and hopefully make it through the shows. Lupus takes away a lot of fun and sometimes it's worth fighting for it (and dealing with the consequences) if there's something you REALLY want to do. 

Anyway...the routine CBC showed some problems: namely that I had almost no white blood cells or neutrophils. Neutrophils are a type of white blood cell that fights infection. The lab where I get monthly checks has an "instant" CBC machine. The nurses in the lab were really alarmed and wanted me to go straight to the doctor. I agreed to call her when I got home. "You're going straight home?" they asked. I agreed. Well...I stopped at Starbuck's first, but that was a necessity! 

And just like that, my plans for the day changed. Actually, my plans for the next 12 days changed. After seeing my PCP and being told to stay home for the next week until getting my blood checked again, I received a call from my rheumatologist (that's my lupus doctor) telling me to come to Pittsburgh to be admitted to Presbyterian Hospital...where I spent the next 12 days in an isolation room, for my own protection. An infection of any kind, even something "simple" like a blister that got infected, or a cold or stomach bug could be "devastating," (per the doc) or even fatal.

Rick Springfield would have to get along without me...

My Father's Chair by Rick Springfield

click the link to hear the song

My father's chair's still standing there
All alone since the long night
Now it's three years on and I still feel
He'll come home, we'll be alright
So where's this healing time brings
I was told the pain would ease
But it still hurts like the first night


That night my brother, my mother and I
Were looking up at a distant star
And wishing we could reach that far
And back in the house
And alone for the first time
We told each other we cared
We avoided my father's chair


I watch my family, we hold on
We are strong and we'll be alright
The clock continues counting down,
All the while
And every child will share the long night
But do the spirits meet again
Why am I still so filled with doubt
Is my soul everlasting


And the far distant future
When I knew you'd be gone
Came too fast and stays too long
Why do they leave the weak of spirit
And take the strong


But when the world turns sour
And I get sick from the smell
And I can't find no comfort there

I climb into my father's chair

The ER at Presbyterian Hospital is huge. Our entire local hospital would fit in the ER there. Getting from the waiting room to the exam room was fairly efficient. Then, things got interesting...when the nursing assistant brought me back to an open exam room, she tried to give my papers to a nurse seated at the nurses' station. This nurse must have been having a rough night (weren't we all?) because he threw a huge tantrum, saying, "I can't take care of the whole ER, don't give me another patient." Then the nursing assistant threw my paperwork on the desk and stalked off. The nurse proceeded to scream at the assistant, "Do you understand me? Do you understand me?" Thankfully, I ended up with a different nurse, who was very patient and laughed off the situation. Ben said, "There was NO way that other nurse was going to so much as breathe in your direction." 

Of course, I wasn't the only patient that night. It was impossible not to overhear some of what was going on in the exam rooms around me. One man, who was dealing with mental illness, was back for his second visit of the week. Earlier, he had bitten a large chunk out of his lower leg, which had been stitched back on. He was back in the ER that night because he had bitten that piece off again. He was so pitiful. He was very, very agitated. Finally he was given something to calm him down. Another man had suffered a stroke. He was making some improvements while in the ER, being able to speak and move parts of his body. His wife arrived, and the nurse asked him, "who is this?" "My wife," he said. "Yes!" the nurse said. "What's her name?" Silence...and then weeping as he cried, "I don't know." So, so sad. So many things to pray about that night. 

Because of the chronic fevers and diarrhea, I was taken for a CT scan of my abdomen, which showed inflammation, possibly caused by lupus. When I was finally assigned a room, it wasn't ready and I was left laying out in the open of the ER for a couple of hours. That was pretty dangerous, given my lack of cells with which to fight any infections. But there was just too much going on there for anyone to really worry about it. 

I finally made it to my room around 3:00 a.m. We had gotten to the ER around 6:00 p.m. Because I needed to be isolated, I was given a private room, for which I was really thankful. Of course, I got changed and into the bed. Then, at 4:00, a nurse came in to do vitals. At 4:30, they come in to draw blood for morning labs. At 5:00, they come in to check your blood sugar. They brought me medication soon after. Then the doctors started coming...and coming...and coming...

Veterinarian's Hospital

 click the link to view a muppet show clip

I just kept reminding myself...

"If it wasn't this, it would be 
something else."

~ "Elizabethtown" 

Eventually, my absolute neutrophil count dropped all the way to 0.00. I stared calling myself "agent 00 neutrophil" (agent double o neutrophil...you know, like agent 007)

When you're under neutropenic precautions, there are a lot of restrictions. Everyone entering your room has to wear a robe, mask and gloves, and avoid direct contact. 

You can't have fresh fruit or veggies (which was one of the hardest aspects for me.) You can't have fresh flowers or plants in your room. You can't leave your room. I had to take numerous medications to ward off possible infections: anitbiotics, antivirals, antifungals, antibacterials...etc. I wasn't allowed to shave my legs or clip my nails. I wonder if God gave me a message about not being able to shave. For some reason, right before Ben and I left home to head to the hospital in Pittsburgh on the 26th, I went in the bathroom and shaved my legs! I wasn't able to do it again until July 8th! I had to be very careful brushing my teeth. Shoes had to be worn all the time. It did get kind of lonely. 

The teams of doctors treating me had varying opinions on the reason for my neutropenia. Some of them were not really interested in figuring out WHY I had neturopenia, they just wanted to fix it. My rheumatologist, however, was VERY interested in discovering why, as it could have been caused by lupus itself, which would be a rare manifestation of my body making antibodies to my own neutrophils, or could have been caused by lupus attacking my digestive tract, as suggested by the CT scan, or could have been caused by my recent rituxan infusion, which, again is an extremely rare side effect (like, 1 in 1,000 people experience this.) I'm really thankful that my own rhematologist was on duty when I was admitted and she was able to oversee my care herself. 

Internal medicine just wanted to fix me and get me out of the hospital. Hematology wanted to give me neupogen shots immediately. My rheumatologist was concerned that the rapid cell growth that the shots would induce could cause a serious lupus flare. She also wanted to check and see if giving large doses of steroids would make the neutrophil count rise on its own, thus suggesting an autoimmune cause for the neutropenia. 

It seemed that all of these doctors needed to get their heads together and listen to each other! It also seemed necessary (to me, at least) that I let them know that I wasn't doing anything unless my rheumatologist agreed to it! I finally found my voice and things started to follow a "plan"...eventually...

But for a while, it felt like this was my treatment plan:

Magical Mystery Tour

click the link to hear the song

Then, of course, there was the few hours where hematology scared us...asking questions about the history of blood cancers in my family and talking about doing a bone marrow biopsy.

One of the most thoughtful items in the little care package that each new patient receives was a pair of earplugs. I didn't find them until the third night. You hear some very interesting things in the middle of the night outside your hospital room door...

Nurse 1: "Smeared with blood?"

Nurse 2: "Yep," and she just kept walking down the hall.

Patient: "The doctor said she would take out the cathetar today."

Nurse: "No, she said MAYBE she would take it out today."

Patient (yelling): "She lied, she lied, she's a liar!" 

(poor guy)

Did I mention that there were 37 and-a-half ceiling tiles in my hospital room? Ask me how I know...

And then there's this lovely thing:

They call this a "hat." I actually had two of them...one for urine and one for stool. Because of my severe dehydration, I had to track all of my liquid intake and output. And because of the positive fecal blood test, my stool had to be tested several times, too. My diarrhea had ended the morning of the 26th, and things turned "the other direction..." I was constipated. It took 5 days to get a sample, and then when I did supply one, a nurse labelled it incorrectly and the lab discarded it! Fortunately, another was "provided." Unfortunately, all three samples I had analyzed tested positive for blood. I had an MRA to check for lupus enteritis (vasculitis in the digestive tract), which was negative. But something is causing inflammation and bleeding in my digestive tract, so I'll have to follow up with a colonoscopy later, when the risk of infection is not so high. 

Every morning, around 3:00 a.m., my blood would be drawn for labs. Then the waiting game would being, lasting until around 9:00, when I would find out the results of my absolute neutrophil count. I couldn't get this song out of my head...(thankfully, it's one of my favorite songs!)

The Waiting by Tom Petty and the Heartbreakers

click the link to hear the song

Oh baby, don't it feel like heaven right now
 Don't it feel like something from a dream
 Yeah, I've never known nothing quite like this
 Don't it feel like tonight might never be again

Baby, we know better than to try and pretend
 No one coulda ever told me 'bout this
 I said, yeah, yeah

The waiting is the hardest part
 Every day you see one more card
 You take it on faith, you take it to the heart
 The waiting is the hardest part

Well, yeah, I might have chased a couple women around
 All it ever got me was down
 Then there were those that made me feel good
 But never as good as I'm feeling right now

Baby, you're the only one that's ever known how
 To make me wanna laugh like I wanna laugh now
 I said, yeah, yeah

The waiting is the hardest part
 Every day you get one more yard
 You take it on faith, you take it to the heart
 The waiting is the hardest part

Oh, don't let it kill you, baby, don't let it get to you
 Don't let it kill you, baby, don't let it get to you
 I'll be your bleedin' heart, I'll be your cryin' fool
 Don't let this go too far, don't let it get to you

For over a week, there was no change in the counts. 

ANC = 0.00

Oh Well, by Tom Petty and the Heartbreakers

click the link to hear the song

I can't help about the shape I'm in
 I can't sing, I ain't pretty and my legs are thin
 But don't ask me what I think of you
 I might not give the answer that you want me to

 Oh well

 Now, when I talked to God I knew he'd understand
 He said, "Stick by my side and I'll be your guiding hand
 But don't ask me what I think of you
 I might not give the answer that you want me to"


 Oh well 

Burnt raisin toast...daily breakfast of champions!

But, there are ALWAYS things to be thankful for...

I must say that Presbyterian Hospital has delicious homemade chicken noodle soup! 

And oh! the joys of a hot shower, even in a hospital. My room had a great shower! 

My oral steroid dose was tripled while in the hospital, to keep ahead of a lupus flare, and also to help the neutrophils grow. I am not happy about this. I was also given several nuepogen shots, to stimulate the growth of white blood cells in my bone marrow. This brought about a modest response. The largest response came from the high dose IV steroids I was given on July 4th-5th. Two days after receiving them, my neutrophil count was high enough that it was safe for me to leave the hospital (late July 7th). 

The neupogen shots didn't hurt going in, but once they started working, I was in a lot of pain. My large bones--femurs, sternum, hips, pelvis, knee joints, arms--ached badly. I was given pain medication and a neat water-based heating pad called a K pad. Too bad it couldn't come home with me! 

The doctor said that the pain was "good" pain, because it showed that the shots were stimulating things to grow in my bone marrow. I knew he was right, but it was still rough. It was even hard to walk at times, my knees were in such pain. 

Singing to the Lord and reading His word helped me through the roughest times...

Fernando Ortega "I Will Praise Him Still"

click on the link to hear the song

When the morning comes on the farthest hill

 I will sing His name, I will praise Him, still.

 When dark trials come and my heart is filled

 With the weight of doubt, I will praise Him, still.

 (Chorus)

 For the Lord, our God, He is strong to save

 From the arms of death, from the deepest grave, 

 And He gave us life in His perfect will, 

 And by His good grace, I will praise Him, still.

 When the morning comes on the farthest hill

 I will sing His name, I will praise Him, still.

 When dark trials come and my heart is filled

 With the weight of doubt, I will praise Him, still.

 For the Lord, our God, He is strong to save

 From the arms of death, from the deepest grave, 

 For the Lord, our God, He is strong to save

 From the arms of death, from the deepest grave, 

 And He gave us life in His perfect will, 

 And by His good grace, I will praise Him, still.

"Oh God, You are My God" by Fernando Ortega

click on the link to hear the song

Oh God, you are my God

 Earnestly I seek you

 My Soul thirsts for you,

 My flesh yearns for you

 In a dry and weary land

 Where there is no water

 I remember you at night

 Through the watches of the night 

in the shadow of your wings 

 I sing because you helped me

 My soul clings to you

 And your hand upholds me

 You alone  

Psalm 63

A psalm of David. When he was in the Desert of Judah.

¹ You, God, are my God,

    earnestly I seek you;

I thirst for you,

    my whole being longs for you,

in a dry and parched land

    where there is no water.

² I have seen you in the sanctuary

    and beheld your power and your glory.

³ Because your love is better than life,

    my lips will glorify you.

⁴ I will praise you as long as I live,

    and in your name I will lift up my hands.

⁵ I will be fully satisfied as with the richest of foods;

    with singing lips my mouth will praise you.

⁶ On my bed I remember you;

    I think of you through the watches of the night.

⁷ Because you are my help,

    I sing in the shadow of your wings.

⁸ I cling to you;

    your right hand upholds me.

Colossians 1:11

  God will strengthen you with his own great power so that you will not give up when troubles come, but you will be patient. 

Isaiah 42:3

He will not break a crushed blade of grass

    or put out even a weak flame.

He will truly bring justice...

Revelation 21:4

 "He will wipe away every tear from their eyes, and there will be no more death, sadness, crying, or pain, because all the old ways are gone.”

You Are My Hiding Place

click on the link to hear the song

You are my hiding place
You always fill my heart with songs of deliverance
Whenever I am afraid, I will trust in You
I will trust in You
Let the weak say I am strong
in the strength of the Lord.

"Sometimes By Step" by Rich Mullins

click on the link to hear the song

Sometimes the night was beautiful 
 Sometimes the sky was so far away 
 Sometimes it seemed to stoop so close 
 You could touch it but your heart would break 
 Sometimes the morning came too soon 
 Sometimes the day could be so hot 
 There was so much work left to do 
 But so much You'd already done 

CHORUS: 
 Oh God, You are my God 
 And I will ever praise You 
 Oh God, You are my God 
 And I will ever praise You 
 I will seek You in the morning 
 And I will learn to walk in Your ways 
 And step by step You'll lead me 
 And I will follow You all of my days 

Sometimes I think of Abraham 
 How one star he saw had been lit for me 
 He was a stranger in this land 
 And I am that, no less than he 
 And on this road to righteousness 
 Sometimes the climb can be so steep 
 I may falter in my steps 
 But never beyond Your reach 

CHORUS

And I will follow You all of my days 
 And I will follow You all of my days 
 And step by step You'll lead me 
 And I will follow You all of my days 
 And I will follow You all of my days 
 (Sometimes the night was beautiful) 

 And I will follow You all of my days

At one point during my "imprisonment" (lol) it occured to me that I've been hospitalized more in the first half of this year than I have in the entire rest of my life...combined.


"Sleepless Night" by Fernando Ortega
click on the link to hear the song


Another sleepless night
 Im turning in my bed
 Long before the red sun rises

In these early hours
 Im falling again
 Into the river of my worries

When the river runs away
 I find a shelter in your name

Jesus, only light on the shore
 Only hope in the storm
 Jesus, let me fly to Your side
 There I would hide, Jesus

Hear my anxious prayer
 The beating of my heart
 The pulse and the measure of my unbelief

Speak Your words to me
 Before I come apart
 Help me believe in what I cannot see

Before the river runs away
 I will call upon your name

Jesus, only light on the shore
 Only hope in the storm
 Jesus, let me fly to Your side
 There I would hide, Jesus

Jesus, only light on the shore
 Only hope in the storm
 Jesus, let me fly to Your side
 There I would hide

Jesus, only light on the shore
 Only hope in the storm
 Jesus, let me fly to Your side
 There I would hide, Jesus

"Lord of Eternity" by Fernando Ortega
click the link to hear the song

Blessed is the man
 Who walks in Your favor
 Who loves all Your words
 And hides them like treasure
 In the darkest place
 Of his desperate heart
 They are a light
 A strong, sure light

Sometimes I call out Your name
 But I cannot find You
 I look for Your face
 But You are not there
 By my sorrows, Lord
 Lift me to You
 Lift me to Your side

Lord of eternity
 Father of mercy
 Look on my fainting soul
 Keeper of all the stars
 Friend of the poorest heart
 Touch me and make me whole

If You are my defender
 Who is against me?
 No one can trouble or harm me
 If You are my strength
 All I ask, all I desire
 Is to live in Your house all my days

Lord of eternity
 Father of mercy
 Look on my fainting soul
 Keeper of all the stars
 Friend of the poorest heart
 Touch me and make me whole

Thanks to my crappy veins, I had to have a new IV placed almost every other day. The hospital had an excellent IV team, though, which was a nice surprise.

I had to find things to keep myself busy. I don't watch much television, and I knew that once I turned it on I'd leave it on, so I read, used my kindle for games, videos and to check email, and I colored...

Many, many friends and relatives sent me special "e-greetings" through the hospital website. When a volunteer finally delivered my cards, she shuffled in and barked, "Ya got a stack o' mail!" 

Thanks to everyone who sent me greetings! It was fun to spend an afternoon reading them. 

I missed my kitties a lot, too...

Fflewddur Fflam wanted to come visit me, so he tried to stow away in Ben's duffle bag...

And even Gemma was happy to see me when I got home...

Ben brought me photos of my flowers blooming at home, because I was missing the display. I always look forward to seeing the orange lilies bloom, and I missed most of their show this time...

On July 4th, a special "exception" was made...I was allowed to suit up and leave the room. Ben wheeled me up to the 11th floor and found a window where we could see some of the fireworks. The view wasn't great (we could really only see the tops of the fireworks), but it was nice to escape and have a "date!"

"America" by YES

click on the link to hear the song
 by Paul Simon

Let us be lovers, we'll marry our fortunes together
 I've got some real estate in my bag
 So we bought a pack of cigarettes and Mrs. Wagner's pies
 And we walked off, walked off, walked off,to look for America

 Kathy, I said, as we boarded the greyhound in Pittsburgh
 Michigan seems like a dream to me now
 Took me four days to hitchhike from Saginaw
 They've all gone to look for America
 All gone to look for America

 Laughing on the bus, playing games with faces
 She said the man in the gabardine suit was a spy
 I said be careful, his bow tie is really a camera

 "Kathy, I'm lost", I said, although I knew she was sleeping
 I'm empty and aching and I don't know why I'm
 Counting the cars on the New Jersey turnpike
 And they've all gone to look for America
 All gone to look for America

 All gone to look for America 

One morning when I was having a particularly "down in the dumps" time, my nurse entered the room humming "How Great Thou Art." 

God sees. God knows. God cares.

He is faithful.

"He's Always Been Faithful" by Sara Groves

click on the link to hear the song

Morning by morning I wake up to find
 The power and comfort of God's hand in mine
 Season by season I watch Him, amazed
 In awe of the mystery of His perfect ways
 All I have need of, His hand will provide
 He's always been faithful to me

 I can't remember a trial or a pain
 He did not recycle to bring me gain
 I can't remember one single regret
 In serving God only, and trusting His hand
 All I have need of, His hand will provide
 He's always been faithful to me

 This is my anthem, this is my song
 The theme of the stories I've heard for so long
 God has been faithful, He will be again
 His loving compassion, it knows no end
 All I have need of, His hand will provide
 He's always been faithful, He's always been faithful
 He's always been faithful to me  

So, the neupogen shots are done for now. The pain from them is starting to dissipate, thankfully. I'll be having close monitoring of my blood counts and working with my lupus doctor to get back on my lupus medications. I've already resumed one, plaquenil. I had to be off plaquenil for about 6 months in 2012, due to concerns it had damaged my eyes. It was during this time that the "great brain debacle" happened...memory loss, trouble having conversations, getting lost while driving, dizziness, using a cane to walk, severe headaches, etc. We don't want that happening again! If my counts hold up well, I'll resume cellcept, too, and decrease my oral steroid dose back to where it was before I was hospitalized. As for rituxan...I'm not sure what my future is with that drug. I know it worked really well for me when I had the two treatments in December 2013. I had NO drop in my wbc or neutrophils from those treatments. My lupus doc just feels it is really unlikely that one rituxan infusion on June 16 caused this severe neutropenia. Was it the rituxan? Is my body making antibodies to its own neutrophils? Was it a combination of surgery, stress, illness, flare and medication? We may never know. If my doc decides to "challange" with rituxan again (that means reintroduce it after having issues with it), I'll be closely monitored. I am really hoping we can give the rituxan another try, but that will be months away. If nothing else, I may be able to resume a drug called Benlysta, which helped with my fatigue, but had side effects which were robbing me of about one week each month. It also didn't help my pain very much. Methotrexate is an option for the pain, but I hated the side effects from that one, too. Lots to think about. 

I'm so very, very thankful for all of the prayers that were and are being said for me. It is so humbling and overwhelming to know that many people are bringing your needs before God's throne. Patience has always been an area in which I could stand to "improve" and God is definitely using this situation to teach me. And it's good to be reminded that we are to praise God...with no conditions. We are to praise Him for who He is, not just when He does what we want Him to do for us. 

"Give Me Jesus" by Fernando Ortega

click on the link to hear the song

In the morning, when I rise

 In the morning, when I rise

 In the morning, when I rise

 Give me Jesus.

 Give me Jesus, 

 Give me Jesus.

 You can have all this world,

 Just give me Jesus.

 When I am alone,

 When I am alone, 

 When I am alone,

 Give me Jesus.

 Give me Jesus.

 Give me Jesus, 

 Give me Jesus.

 You can have all this world,

 Just give me Jesus.

 When I come to die,

 When I come to die,

 When I come to die,

 Give me Jesus.

 Give me Jesus.

 Give me Jesus, 

 Give me Jesus.

 You can have all this world,

 Just give me Jesus.

I can't say enough thanks to my patient and selfless husband, Ben. He came to see me every day, while balancing work, the farm (it's hay time), the churches, our pets, and his own exhaustion. I love you so much, Ben. You truly love me with the love of Christ and I'm so very thankful for you.

I'll be starting physical therapy next week. I'm so weak right now. I've lost so much muscle tone and fitness. I've basically been in bed since having my gall bladder out on May 5, then pneumonia, then lupus flaring with diarrhea, fevers, etc., and rituxan and this neutropenia. I look forward to being strong enough to do my daily tasks at home, cooking, cleaning, etc. 

And what about running?

I don't know when...I don't know where...

But I will.

WATCH ME.

"Let mercy lead. Let love be the strength in your legs, and in every footprint that you leave there'll be a drop of grace." ~ Rich Mullins

"There is something magical about running; after a certain distance, it transcends the body. Then a bit further, it transcends the mind. A bit further yet, and what you have before you, laid bare, is the soul." 

~ Kristin Armstrong

#LHandSign 

2 Samuel 18:23 

"But come what may, I want to run."

Join me in the journey...

"The Middle" by Jimmy Eat World

click on the link to hear the song

Hey, don't write yourself off yet
 It's only in your head you feel left out or looked down on.
 Just try your best, try everything you can.
 And don't you worry what they tell themselves when you're away.

 It just takes some time, little girl you're in the middle of the ride.
 Everything (everything) will be just fine, everything (everything) will be alright (alright).

 Hey, you know they're all the same.
 You know you're doing better on your own, so don't buy in.
 Live right now.
 Yeah, just be yourself.
 It doesn't matter if it's good enough for someone else.

 It just takes some time, little girl you're in the middle of the ride.
 Everything (everything) will be just fine, everything (everything) will be alright (alright).
 It just takes some time, little girl you're in the middle of the ride.
 Everything (everything) will be just fine, everything (everything) will be alright (alright).

 Hey, don't write yourself off yet.
 It's only in your head you feel left out or looked down on.
 Just do your best, do everything you can.
 And don't you worry what the bitter hearts are gonna say.

 It just takes some time, little girl you're in the middle of the ride.
 Everything (everything) will be just fine, everything (everything) will be alright (alright).
 It just takes some time, little girl you're in the middle of the ride.

 Everything (everything) will be just fine, everything (everything) will be alright (alright). 

59 days until FOOTBALL...