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It was a very strange night.  I fell asleep early and the staff tip-toed around me all night.  Pam says I snored rather loudly, but I think she was exaggerating.  (Ok, maybe not.)  When I woke, it was groggily.  And it was almost 7:00am this morning before I woke for good.  I can’t put my finger on what made it a strange night, but it was.  I have the feeling something else was going that I just didn’t catch on to.  Anyway, it’s over.  I am home.

Pam and I had a great talk as we waited for the moment we could leave.  And that took several hours so there were other things going on too.  Specifically, God was busy making a point.  Remember that I told you God revealed to me before I came up here this week that the hospital staff was watching me.  And then I was assigned to the 4th floor instead of the 5th floor and I freaked out.  Right?

When I took my eyes off myself, I saw them watching me.

And I was on the 4th floor with the same nursing Tech most of the week.  “J” is not from this country.  She is from a scary place in the middle of the world where anything can happen to good people.  I don’t know exactly what happened to J back there in her old country, but she left there for Germany and then for the US and has no intention of ever going back.  She was watching me.   And since I was unaccompanied all week,  she made sure that I wanted for nothing.  On Monday, I found myself making a curiously simply yet colorful sign for my room.  The scripture came to me from . . . Gee guess.  “I can do all things through Christ who strengthens me.” Philippians 4:13

J was reading my sign over my shoulder.   When she got to the word “Christ” she made a soft sound like “ugg.” I wasn’t sure what it meant.  Was she Islamic?  Jewish? Or someone beaten by life, with no faith left?  I was pretty sure she wasn’t a Christian.  And I was pretty sure she would not respond if I tried to convert her!   So I didn’t say anything.  But I was nice to her and she watched me.   I think we became attached to each other.  Yesterday, I told J I was going home “tomorrow”  and she said she was happy for me but sad for herself.  “You are the funnest on the floor.”  Then this morning J came on duty and I must have been her first stop.  She walked in on a conversation Pam and I were having that was very emotional.
“You are crying. Why you cry?”
“It’s a good cry, J. Do you have a sister?”
“Yes, I have sister.”
“You ever have a good cry with your sister?”
“No.  No cry with sister.”
“That’s too bad.  Sometimes a good cry with your sister is just what you need.”

Only it didn’t agree with my blood pressure and every time J tried to take it, it was way higher than we both knew it was.  “You rest.  When you no cry with sister, you reading be better.”  Pam had taken a walk by then and J looked me in the eye and took a chance with her feelings.

“I feel so bad for you children.”
“No, J.  You don’t have to worry about me or my family.”  And I looked her in the eyes to see if I could take my own chance.

“My God takes care of me.”
“I see that.”

She hugged me.

I still felt that I couldn’t come right out to her that My God could be her God too.  So I keep it about me.

“J, we came here to Florida because we were told that on this chemo, I wouldn’t be able to care for my children. OR myself.  This is very nasty stuff.  But you see how I am.  And you see others out there on the floor. My God takes care of me, J.  We need to pray for the others.”

She looked around and then back to me.

“I have my faith, J.  It protects me.”
“You faith . . .must be very strong.”
“It is.”

With that Pam came back in the room and J closed up again and went on to her other charges.  There were visits from a couple of doctors that didn’t want to miss saying goodbye.  Nothing concerned them with my case. There was just that swollen left leg.  Someone mentioned  Lymphoedema.  (That wouldn’t be good.)

Within a few minutes it was time to go.  J was in the hallway to say goodbye and gave me another hug.  Two hugs from one who never cries with her sister. . .

“I’ll be back in three weeks”
She nodded.

With that Pam and I were off and down the hall.  It took some time to get everything loaded in the car and us on the way.  It was quite a while before I could get my mind back to J, my European Friend.

God said they were watching.  God set me up on the 4th floor.  And God made his point.  With me at least.  That he knew what he was doing.

There was many who watched this week.  And one who may have been saved because of the watching.

She was the 4th floor.

12:45am
Just got some Blue juice.  Next wake-up will be at 2:00am.  I get a long nap here in between.  (Now you know why I am so tired when I get home!)  Just letting you know I’m awake.  Lol  Going to sleep.

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5:00am
My staff was great overnight.  I was able to get the meds I needed without coming out of REM sleep!  I woke at 2 and 4am, but I didn’t wake far enough to pull me out of bed.

6:00am
I have been dozing  here in my bed.  Watching TV and the back of my eye lids alternatively. Lol  I am having trouble talking, but this is probably due to my Fibromyalgia more than the Chemo.  Nouns, you see.  Fibromites have problems with remembering the names if things sometimes.  I did just get another dose of the Methylene Blue and the Thiamine is hanging.  I can feel that they were needed.

8:00am
More snoozing brought me to breakfast time and my tray.  I got out of  bed and into my day clothes.  And I went down to the pantry and made myself a banana coffee smoothie!  I can’t drink hot coffee while on this chemo.  But cold coffee is ok, go figure.  It’s the smell.  It’s all in avoiding the smell.   I blended up some milk and ice and threw in a banana I had been saving for such a purpose, and some carnation instant breakfast powder (Only had strawberry today . . .) And then some coffee and more ice.  Yum!   My tech just laughed at me.

I am back on my game today.   I got more sleep and  I have the blue stuff.  I am dressed before 8:30am.  That’s a good sign.  I am going to have my walk outside before the Flock of Docs come swooping over me.  Have a little good morning with the sun and the SON.

I just talked with my intern.  He says my walking papers will be ready for the moment of escape.  The moment the last drop drips and they take out the lines going to my port, I can be gone.  Not that I don’t like it here . . . Just that I like it home better.  I miss my family. I want to go home.   My sister, Pam, will be coming up sometime today. She is staying over tonight and taking me home in the morning.  What a sweet peach she is.

Plans for the day:  I have a ton of paper strips cut and ready for beading.  That is my project of the day.   I have to get my things packed up by the evening time.  “Other than that, I am open God.   If you have something needing doing, just holler.  Choose Me, God.”

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11:00am
I had my walk outside.  I tried to take some pictures of where I hang out around  here.  (Taking pictures here is tricky because you cannot have any other patient in your shots for privacy reasons.)   The first is the 4th floor lobby by request.

Lol  Now, outside were I sit in the grass and breath in fresh air.   By myself it was hard to do!  See my shadow waving to you?

Lol  I finally found someone to take the picture for me.

After my walk, went back to the room and started working on my beads.  The pastor on duty came in to talk.  She had visited me a couple days ago and talked and prayed with me.  This time she wanted me to know that she did remember meeting me before.

“I remember now meeting you briefly during your first week here.  You were scared.”
“I was.  We had been told that this chemo would be horrific. My surgeon in Oregon told my sister that I wouldn’t be a mother, wouldn’t be wife, I would barely be human.  I brought that fear with me instead of my faith. And look what happened to me.”
“Now your attitude is different and you are doing so well.  Maybe God needed you to see how bad it could be.”
“Maybe your right there.  How does one get through this without faith?”
“They don’t.   I see people rolled up on their side in their bed in a dark room with the covers over their head.  They don’t move.  Just waiting for it to be over.  They don’t even want to lift their head to say hello to me.  I don’t have to pray with them all the time.  I can just sit and talk with them.  But they don’t want to visit.  I think If I was in the their place, I would want someone to come and talk with me.”
“But they don’t.”
“They don’t.  I come here and I see you and it’s so different.  I see what I want for them here with you. Some people have such a bad time with chemo, but you . . .”
“I don’t have any other way to explain it but to attribute it to my faith.  I have angels here helping me.  I have a hedge of protection around me.  I have people praying for me too.  I have my God to help me.   I keep busy so that the devil can’t get in to scare me again.”
“You are an inspiration to me.”

She prayed for me then.  And thanked God for the Gift she got from me.    I don’t tell you this as a braggart.  But I want to share with you what how God can use you too.  You may not see it as an important role to play - Playing Christian.  But they are watching you too.  But if they watch you and just see the bumper sticker fish speeding through the red light . . . What impression have you given them?

After my visit with the Pastor, the Doctors came around.  I had resumed my bead making and was in the middle of a tiny one - harder to keep track of those tiny ones.  The doctor in charge of the group sat on my bed and asked, “What are you making today!  I love to come see you in the mornings just to see what your up to!”   Then she turned to the younger doctors and said, “You people go on and finish the rounds.  I am going to stay here!”
They all laughed.  And looked closer at my beads.    “If you are able to manipulate the tiny beads, your hands must be doing better than yesterday.”
“Oh, yah. Thank you for that.  I haven’t turned blue yet.  Not even a bit sad.”  Hehehe  “I am doing much better.  I got more sleep too.  That helps.”
“OK then you should be ready to go home in the morning.  Your paperwork will be ready.  You don’t have to wait on us.”
“That’s good, because I wasn’t going to!  I want to go home!”

And with that they were gone.  All of them.

It’s nearly lunch time.  I am going to hang with these beads.  I might go to the art studio today in the other building.   It will depend on whether or not they give me the medication to make me pee out this fluid I have been holding on to.  I’m not taking my top hat with me!  All the fluids entering and exiting my body is measured.  They have to match up  Their not measuring up.

I might also take a nap. . .  I am getting more Methylene Blue at noon.  I think I might be needing it.

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1:40pm
I am tethered to the toilet. I have one leg swollen with fluid.  They gave me medication to get it running out the other direction.  I won’t be making the art studio again today.  It’s not a big deal.  The fluid will go down over the next few hours.  I just need to stay put until it does.  The Methylene Blue was delayed an hour and I could tell.  My eyes were floaty and my hands shaky.  I get the thiamine going home.  I don’t think I can take the Methylene home.  I wonder what will happen when it wears off. . .

I have Pam’s cot all ready for her.

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7:00p

I slept through the afternoon.  Except for the times I went to the potty.  It’s shift change now.  I wonder who I will get for the last night.  I have had different nurses all week, but the same tech during the day.  Today I told her that I was going home tomorrow.  She was happy for me but sad too.  She said I was the funniest patient on the floor.  Lol

I finished the making all the paper strips into beads. I haven’t counted them but there must be over 70beads there.  I’ll count them when I glaze them.  I need to start packing up.

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8:30pm
I am getting loaded down here with all my extras -  the Methylene Blue, A steroid for nausea, something else? . . . And I am finishing up the chemo here in a few minutes so those bags will be removed. I am packed.  I can’t wait to get home.

My left leg is still swollen. I have a good explanation for the swelling on the one side only.  It is the same side as my surgery.  The fluid went down one side only because I no longer have clear equal connections to both legs. Interesting.

9:00pm
I am going to post this early.  I will be getting my chemo lines removed here in a minute and I am watching LOST!   Lol   Pam is making her way up here now.  I am going home in the morning!  I can’t wait to hug my husband and  hold my babies. And sleep in my own bed.

2:30am
Awake again.  I have been talking the ear off my Nursing Tech.  Somehow we got on the subject of my story and how far I have come in my journey– not just from Oregon to Florida, but from the first hint of cancer, from the mistakes made in my care that caused the rapid growth, from having no where to get treatment because I had no insurance, radiation finally at the private center, surgery at OHSU, to H. Lee Moffitt Cancer Research Center.

God is good, people.  No matter what is happening in your life, know that God is bigger than whatever it is.  Don’t forget to invite him in!

I need to get some sleep.  I am having trouble getting my fingers to produce the words I want on the page without the use of the back button every three words.  I will try this again.

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4:50am
I almost slept through this time slot this week.  But at the last moment, when the tech was backing out of the room, she quietly said, “Mrs. McNabb,  When you wake up again to use the bathroom, let me know so I can weigh you, OK?”  “I’ll get up now.”  And here I am.  But I was able to have a BM.  (haha Look at me, like an old gramma, I say, “BM” ) and that is good.  I weighed three pounds more than yesterday.  That means I am holding fluids.  They will have to give me something that will make me give reduce the fluids.  I will have to stay close to my potty for a while.

My hands are more jumpy.

I am

I don’t know what I meant to say there.  I fell asleep!  I’ll catch ya later,

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10:00am
I slept through to 7:30, but I am still so sleepy.  I had breakfast and a shower and got dressed in regular clothes.  I am now waiting on the doctors to make their rounds.  I will take a walk after they come and go. I need to feel the sun on my face. But I will definitely need a nap today.

There is a show on The History Channel now, “Exodus Decoded” which promises to show proof that the Exodus- when the Jews, lead by Moses left Egypt via a parted sea - really happened.  I am very interested in this show because I am reading the Exodus in my daily Bible reading (the Bible in a year reading) now.  I hope I can stay awake to watch it all.

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12:30pm
The doctors came and went.  Because of my jerky hands and the fact that my eyes are starting to tunnel, they have decided to add Methylene Blue to my arsenal of medications to keep the neurotoxicity at bay.  If you remember, that is what Dr W wanted to use in the first place, but the team decided to use Thiamine first because it is all natural- just a high does of B1.  The Thiamine has been working fine so far.  But they want to stay on top of things. So they are going to add the Methylene Blue - nothing is going to be stopped, just added.   There are some possible side effects of  this chemical compound.  Including dizziness, nausea, vomiting, confusion, headache, fever, ab pain, anemia, blue pee . . . And your skin could turn blue as a Smurf.  Lol   Too bad it’s not October and Halloween again!

I just talked to the nurse about it.  She said as long as the blue stuff is pushed slowly there is very rarely any side effects.  She has seen fingertips turn blue . . . But never the whole person.  The medication has been ordered. But it’s not here yet.

I had a walk already, just in case I don’t get a chance again today.   I had my lunch.  I am ready for whatever.

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3:30pm
I have been sleeping off and on since 1:00 or so.  My nurse brought in the Methylene Blue around 2:00.  It came in a syringe.  She hung a new small bag of clear fluids and ran the Blue through it as we talked.  Before I knew it, it was all in the line and the nurse was on her way out the door.   I soon resumed my on-again, off-again nap.  I didn’t make it to the art studio today, but the nap was more important.  I haven’t been awake long enough to figure out if the Blue juice is making a difference.  I don’t even know if it has been mixing around in there long enough.  I have still been using the back button a bit here as I type.  I am already peeing like a Smurf.   And I am feeling kinda . . . Blue here as I am waking from my nap.  (Sorry I couldn’t resist that one.)  I will let you know how I am feeling as I go.

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9:30pm
Well I haven’t turned blue yet.  After I slept and ate dinner, I was clear again and my hands were able to fold paper again.  I made a few origami creatures and started on some paper beads and I forgot to write about it all. I guess the Methylene Blue is doing it’s job.

I am going to get into my jammies and work on these beads while I watch House on TV and remember Dr H back in Oregon.  (For those who just joined the story: my family dubbed him “House” because he was able to put sense to what was happening to me and he was the only Doctor on the Pacific Coast that could take the sarcoma out of my tush without leaving me a cripple. “House.”)

I have my last bag of both Ifosfamide and Doxorubicin.  I will finish up with them tomorrow night at 9:00 and have an extra bag of the Mesna (this is a piggy back medicine that goes with the Ifosfamide to protect my bladder from bleeding) for twelve hours.  And then I will have made it through another cycle. Four Down.  God is Good.

10:00p
It’s ten o’clock and all I well again.  Tomorrow will be a better day for me.  Today was kinda sleepy!   Time to put this to bed.  And me to bed too.

Go to bed yourself.  And have a great dream.

2:25am
I woke up at two with the nurse fiddling with my IVs.  I remember seeing midnight, but not much after.  Not a full night sleep.  I will fall back asleep in a few.  Meanwhile, I am surfing the internet and the TV.  And my mind.  I settled on Origami on YouTube, Fresh Prince on Nick-at-Night, and yesterday’s church service.

Do you ever wonder why you sit in the same spot every week?  Left side, close to the front.  This time, Dan guided me up the middle on the right.  “But this might be someone else’s regular spot.  Then they will have to choose a new spot and will sit in someone else’s place, who will have to find a new . . .”  Dan just laughed at me.  We sat a couple rows behind the Pastor and his wife.  They sit in the front row during Worship, not on the alter. (I just now realized how different that is.)   Those people that usually sit in my new favorite place were able to meet and greet some other church neighbors this week.  See how easy it is for God to mix things up?  Don’t ever say that God doesn’t use you for his own purpose.   One little change, like where you usually sit, can change the life of someone else.  Most times, you never know what you did and what change it made.

I am falling asleep again.  I’m going to give the night another shot.

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4:00am
Awake again.  Thiamine.  And a blood draw.  My nurse had a little difficulty getting the blood to flow out of my port.  She had me sit up slightly and put my hands over my head.  That seemed to do the trick, except that there wasn’t quite as much there in the second vial.

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5:45am
I woke up with the tech coming in the door this time.  I have a pill to take at six so I might as well stay awake for that.  Lol

My nurse brought the pain medication and more thiamine.  And my blood work results.  My blood counts are fine.  But my glucose is high.  I don’t get why that is.  I will have to have more insulin.

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6:30am
Shhhh!  I am watching my preachers on TV!  Joyce Meyer is on now.

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7:00am
Don’t be that quiet!  I slept through Joyce!  I will have to watch her at 7:30 on another station.   Lol. I am awake now.  I just had my insulin shot.  Dr Creflo Dollar is on now.  I am reading his book. . .  It is time for Shift Change.  I wonder who will be my new nurse?

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8:45am
I just got back from a nice walk down to the cafeteria to get a frappuccino from the vending machine.  I haven’t met my nurse for today yet, but I have talked to the intern in charge of me. He says I look good.  Hahah.  How’boutdat?  He said my labs look great.  He is not worried about the high Blood Sugar.  He says that the steroids and fluids that they are giving me will cause a high count.  As long as I don’t fight the insulin shots . . .

I did something different today.  I got dressed in blue jeans and a jean shirt.  I have always stayed in my PJ’s the whole time I am here.   This time, since I am working  . . . Hold that thought — call from Dan . . . “No, I don’t know what Jaymi is talking about.  Just the report card that has to go back.  No, I don’t know of a different form to be signed.  She’ll have to get a new one. . .Ok, bye”   Ok, where was I, Since I am working without an IV in my arm, I am able to get dressed without a nurse to help me with the tubes.  I brought button down shirts and blue jeans. Whoo Hoo!  Before my walk, I got dressed in street clothes, and did my make-up.   I wasn’t gone long, just enough time to go to the vending machine and then go outside for a breath of fresh air and a good morning to my Lord with the sun shining on my face.  The air is a brisk 51 degrees.  Cold for a Floridian, but just fine for me.  I was gone less than twenty minutes.  Just long enough for the new nurse to miss one of her charges and come to my room as soon as I returned.  Hahah

I am fine.  I am waiting now, for the team to come around and see for themselves how fine I am.  While I wait for them, I am getting out my art supplies.  This week I am working with paper.  I didn’t have any silk to paint.  I have stuff for paper beads,  I have origami papers, I have water color pencils and a water color pad.  I have two sketch books - one with thin paper, one with thick paper.  I have paper, wires, and glass beads to make my paper flowers.  I have glass pebbles to make magnets with saying or scripture showing through if I so desire.  I also have embroidery floss for making lanyards or bookmarks.  I am covered.   I can see your faces now, no wonder I have to much stuff to carry up!  Lol.   I do have so much stuff, but all that paper crafts takes very little space.  And even if it took two wheel chairs to take it all up, if it keeps my mind busy it is worth the effort to log around.

Attitude is everything when you have cancer.  You must not give in to what the adversary is trying to tell you.  You cannot believe the looks people give you when you tell them that you have cancer.  If you are going to be healed, you must believe you will be healed.  If you are going to have the strength to make it through the medical process, you must believe you are strong enough to do it.  There can be no wimps in this battle.  When I let myself feel depressed, and it happens- I am human, I feel the pain more.  I feel the fear of it all.  If it weren’t for my faith, I wouldn’t know how to do this.

This is a hard subject for me, because I have lost loved ones to cancer.  What makes me different?  I don’t know. I don’t have the answers to that question.  Not yet.  I am still here.  I am kicking and fighting.  And I will …

Since I am still waiting for the doctors to make their rounds, I will wait to finish this conversation.  They might mistake my tears for sadness. . . .

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12:40p

I just finished my lunch.  I brought a my favorite Instant Ramon Soup from home and ordered a salad and fresh fruit cup.   I’m saving the salad for later.

The flock of docs came and went.  They were impressed with my progress.  There were a few young doctors that knew me from previous trips.  They each had a smile for me that claimed some credit for my well being.  I had to laugh.  All the credit goes to My Lord.  But I know that these doctors are looking out for me.  The one in charge is never the same from cycle to cycle and they don’t know me.   I get a kick out of their reaction.  Compared to my old life, this is hard.  But compared to most of the other patients sequestered into there own rooms, I am doing better than I should be.  I keep thinking about how Dr. H said I would take the treatment.  I keep thinking about what I read about this protocol on the internet.  Sarcoma Chemo can be have side effects that are worse than the cancer.  That first treatment that went so bad . . . I walked into it with fear.  I forgot to invite God along.  I slipped up and believed what the devil was whispering in my ear.  Ever since, I have kept on God’s heal.  Following him around like a puppy.  What a difference.

After the Doctors left, I went on my walk.  I took my CD player with a worship cd, and my book “8 Steps to Create the Life You Want” by Dr Creflo Dollar.  What a good book!  I went outside and sat in the grass under a tree. I sat there with the CD player turned up full blast, wanting to sing at the top of my lungs and hoping I wasn’t!  The worship music going in my ears and the sun on my face was just what the . . . The Father ordered! After a bit, I turned off the music and read for a while.  Soon the wind picked up a bit and I collected my wares and went back inside.  I found a great chair looking out over the hospital in the 4th floor lobby and turned my music back on. Lol Wow.  It felt good.

When I got back to my room, I wasn’t done with that CD!  So I danced.   Danced!  I danced until my lunch came.  Which brings me to now.  All and all, a pretty good morning.  Now I need to create some new artwork.  One of the young docs looked around and asked what “we” were making this week!

They are watching me.  I want them to associate the Bible in my hand with the report in my file and the smile on my face.  I don’t know how I got to this place in my life.  But I have to play it out.   This is what I have been called to do with my life at this time.  Who woulda’ thought.

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4:30p
I am so tired.  I went to the art studio for a little while around 2:30.  The were set up for watercolor painting.  I do much better with silk painting than the watercolors!  I ended up making a large paper full of colors that I will cut into paper beads.  Then I came back to my room and played with my watercolor pencils.  I made a new sign for my wall: I can do all things through Christ who strengthens me. Philippians 4:13.  Then I made a flower with a stem I had ready.  It turned out nice.  Stands on it’s own.  I am so tied now.  I didn’t get much sleep over night and I didn’t lay down in my bed all day!  I am going to give it a shot before they bring my dinner.  (Which I won’t eat because it’s the same as lunch.  I’m too tired to eat anyway.  My blood sugar has risen even higher.  They keep shrugging it off to the medications.  That can make me sleepy too.  I’ll let you know if I was able to sleep . . .

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7:00pm
I didn’t sleep.  I got in bed and called home.  That took me until the food tray came.  I ate dinner and took a quick walk.  Then got in my pajamas and straightened up the room.  That brings me to now.  I am going to hang here in bed and learn how to make some fish origami from a video on YouTube. (If you stay off the beaten path at www.youtube.com you can find some pretty useful videos.  How-to anything.  Use the search bar.)

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9:45pm
I needed a breakthrough pain pill tonight because I had a massive headache develop after dinner.  I haven’t had an extra pain pill for quite some time.  I feel better now though!  I have been sitting here watching the State of the Union Address and folding paper into fish.  I thought fish would be a better symbol for me than the cranes that are everywhere here at Moffitt.  It’s getting harder to fold.  My hands are starting to jump slightly.  Not enough to freak me out, but enough to interrupt small motor movements like typing and origami. The next bag of Thiamine will help, but I know by experience that it will keep getting worse as the Ifosfamide builds up.  It wears off five or six days after I go home.  A small price to pay.

I have to admit that I am a bit lonely.   I think the staff would rather I had someone else to talk to as well. Lol.  I have been a bit chatty with the staff.

I am glad to announce “It’s ten o’clock and all is wel-ll!”  All and all, it was a good day for chemo. Tomorrow I hope to report that I got more sleep over night.  That would be help to make it an even better day than today.

I am falling asleep now . . .In fact, I can’t even get  the editing done without falling asleep!  So, please overlook typos and I will fix it in the morning.  Night.

I am here at Moffitt, ready and waiting for my 4th round of Chemo to begin. Dan and the kids just left. I am here alone. That’s not true. I am here with my God. The Holy Spirit and I will keep good company.

I thought since I will have all these thoughts in my head and no one but the nursing staff to share them with this time, I would share them with you. And because I haven’t been writing much lately, I think you will get a kick out of it. So, I will try to keep a running tab on what it’s like to be me having chemo. Remember, this is not the chemo that most people get, I will be here until Thursday morning. The chemo will be dripping the entire time. I will try to post each night. Please be patient for the posts and keep praying for me.

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Dan didn’t want to leave me here alone. But since he had the kids with him, he had no choice. Before I checked in, we gave the kids a tour of the hospital. We took them through both the hospital lobby and the clinic building lobby. The clinic building is empty at 4:00p on a Sunday. I showed them where I have my lab work done, and where the art studio is. I showed them my doctor’s clinic office and the cafeteria. Then I checked in and we went back to the car for my things. I bring a lot of things. We use a wheel chair as a bell cart! Then we all trekked up to the fourth floor to my room. I was disappointed to be assigned to the fourth floor, to tell you the truth. The fourth floor is where the hematology patients stay. These are people with blood cancers.

Hold that thought. I am going to go down to the cafeteria to get some dinner before they start my chemo. BRB

**********

Ok, I’m back. Since I was not on the food service list for tonight’s dinner, they gave me a food card to go to the cafeteria for dinner. I had a salad. One thing that I figured out over the weeks is that cooked food smells really bad when your taking chemo. Just the smell of hospital food can cause me to throw up. So I made myself a rule. No cooked food in the room. Period. I eat sandwiches and salads fresh fruits and cold foods. I bring food with me from home that I know I can eat. One thing that works for protein is beef jerky! I can eat that.

***********

I just spent some time answering questions for my nurse. I always think the answers to the questions they ask me should be in my file already. But I answer them just the same. It’s 6:45p and they haven’t started the chemo yet. V, my nurse for fifteen more minutes said they would start it on next shift maybe 8:00 or 9:00. No no people, you don’t seem to understand, I get three 24hr bags of both chemotherapies and then 12 hours more of Mesna (a medication that is served up with the Ifosfamide to protect my bladder) and fluids. That takes me to Thursday morning. My sister, Pam is coming up Wednesday night to spend the night so that we can get out of here early Thursday morning. EARLY! When the last drop of the Mesna falls I want OUT OF HERE! Lol. But I wanted it done by 7:00am! Not 8 or 9:00am.

************

It’s 7:30 and I haven’t gotten my chemo yet. I just decorated my Chemo Cart. Lol I hang beads and do-dads and stuff animals from the IV cart so that when I look at it, I see this collection of colorful funny stuff before I see the bags of poison and I smile. And most other people who see it smile too. I got caught in the process by my new nurse. I don’t know if she just was surprised or if she didn’t like it. But it’s staying. Whatever it takes to get me through this in better shape than everyone else . . .

I didn’t finish telling you why I like the 5th floor better than the 4th floor. The first time I was here for chemo– when things didn’t go so well, I was here on the 4th floor. Since then I was on the 5th floor. I got used to the staff up there. I was looking forward to having the same people again. (Most of them lol) There is one nursing assistant -they call them techs here, that is waiting on her nursing license. She was a nurse in Germany . . . I was looking forward to seeing her again. There are several people up there I was looking forward to seeing again.

When we got home from church this afternoon, I called up here to check on my room. When I heard that I was not on the 5th floor, I let it bother me. I called back and asked to be changed. I let the room assignment be the excuse to start freaking out over having to come here at all. “The devil is messing with me. I am supposed to be on the 5th floor!” You see, during our worship service this morning, God revealed to me that people are watching me here at the hospital to see how a Christian handles chemo. The nurses see that I am doing better than I am supposed to be doing on this protocol. They see the scriptures I have hanging on the walls. I don’t have to preach to them. They are watching me. I expected the staff that was watching me this time, to be the same ones as last time. I guess God had other plans.

********
8:00p
It is kinda quiet here by myself. Still no chemo.

********

9:15p
Finally! The Chemo is dripping. Nearly five hours after I checked in, I finally get the chemo. I don’t like to be here one moment longer than I have to. I thought we timed it better than last time. Last cycle Dan and I checked in in the morning so that we could see my doctor, who was on rounds for the weekend, at check in. That made me have to stay ten hours longer than needed because I finished up too late to drive home. I thought that checking in at 4:30p today, would have me done by 6:30a on Thursday. But I forgot to figure in the dreaded shift change. No one - not the nursing staff, nor the pharmacy staff wanted to have chemo bag changes coinciding with shift change! Oh, well. By the time I get the perfect time to check in down, it will all be over.

All be over. Sounds nice.

**********
10:00p
It’s getting late. The staff here on good old floor four have been very nice. Just about everyone here at Moffitt loves their work and who they work for. I know because I always ask them. You can tell when someone is telling you the truth when they say they love their job. People like working here. When the staff is being treated well, they treat the patients well too. They care about the care they give. It makes a difference.

I am going to turn down the lights and get comfortable now. No matter how much the nurses care, they still don’t let you sleep very much in a hospital. I’ll let you know tomorrow, how the night goes.

Tomorrow’s another day.

Dan and I are on our way home from Tampa.  We have been to see the east coast wizard at the H. Lee Moffitt Cancer Center.  Dr. W is a funny man.  I like him.  Dan and I pushed him to give some answers that he couldn’t or wouldn’t answer in complete sentences.   We wanted to know when this would be over.  When could we resume life as on a normal scale.  We didn’t get all the answers we wanted, but we did get some ideas.

“Remission” isn’t what I thought it was.  Dr. W explained to us that “Remission” originally  referred to bone marrow returning to a normal condition in Leukemia patients. The term has been applied, erroneously in Dr W’s opinion, to other cancers.  Hmmm.

“I need to know how to pray.  I need the word that means “The Sarcoma is Gone.”

Seems the phrase we are looking for in my case is “Complete Response.”   We want the cancer to have responded to the chemotherapy completely.  Poof.  Be Gone.  And Dan and I were trying to get the good doctor to tell us exactly when that would happen.  Lol   As in “Ah, next Tuesday at 2:18p sharp”

He wouldn’t tell us.  After all he is not God.

Here is what he would tell us . . . I am doing good.  As long as the Chemo is responding, we keep going with it.  As long as my blood counts continue to return to acceptable levels, we keep going with it.   Most people on this medicine have between four and six cycles.  Some have more.  Some have less.  After every two cycles we do the scans.  If there is any growth, we stop and try something else because the name of this game is “Response.”

“If after six treatments there are still spots, can we just go in and take them out? At what point do we consider surgery?”  Dan asked the question on my note pad.
“That would depend on how many there are.  And the right surgeon.”
“Is there a surgeon here that could do it?”  Visions of Dr House danced in my head.
“Ah. . .Yes. . . .Keep in mind, one or two spots, we could take out.  But you have to understand, we can not just go into the chest and start berry picking.”

“Yes I understand.”   Ok, let’s take this in another direction here. . . “What if, after this fourth cycle, we take a look and there is no spots left?”  I leaned in and asked.

“If after four cycles there are no spots left . . . I would recommend that we do two more cycles and then be done.”

“That’s what I thought you would say.”

It makes sense.  As long as I am tolerating the treatments, we should play it out.  Get every last cell.  As much as I hate being away from my home and my family. . . As much as I hate being in the hospital . . . As much as I hate the chemo and how it makes me feel. . . I have to agree that even if the scan is spotless, we need to do the last two treatments.    (I like saying that  . . .“the scan is spotless” . . .)

Then we talked about the next chemo.  We are starting on Sunday (as planned).   I told my family that I want to do this one alone.  I am doing fine.  I don’t need someone to stay with me this time.   It took some convincing, but Dan finally agreed.  I also convinced him that the kids should come along on Sunday.  Since Dan is not staying over, the kids can finally see where mom goes every three weeks.  They have never been to Moffitt.  Sundays are very quiet up there.  They can get a tour and see me to my room.  It takes a couple hours after I check in before the chemo is ready anyway.  They won’t have to see me hooked up to anything.  (Brandi has a hard time with IV’s.)  It will be a long ride up and back for them, but they have been asking to see the hospital . . .
*******
I was sitting in the doctors office listing to medical mumbo . . .  “Chemo cycles, and berry picking surgeons” . . .

And then I was sitting in the car listening to God  . . . “I am the Lord, who heals you.”  Exodus 15:26

I like God’s message better.  Go God!

********
I will be praying for my “Complete Response.”   You see, I like Dr W.  I would love to bless him with a nice write up in the medical journal of his choice.

It’s a Win-Win situation, right?

Has anyone seen my sense of humor?  Ever since this Chemo started, I haven’t been able to find it.  I must have set it down somewhere.

I’ll keep looking.

I have to tell you something.  I am amazed.  I never asked you  to pray for my eyesight, but I know that you have.  There is a new filter in front of my eyes and I can see more clearly.  I kid you not.  It started a couple days ago, but I didn’t say anything to anyone.  But I felt the prayers working.  Thank you.

Now, let me tell you about the rash on my face . . . Lol

********

We just came from church.  If you don’t walk away from your church knowing that God was there, if your not totally spent from the worship, if you have not been convicted and delivered from the rigors of everyday life, find a new church.

I don’t say that lightly.  I have cancer.  I don’t have time to sit through a dead church.  I need the Spirit working overtime.  If I could have teleported each and every member of my family into the pew beside me this morning, I would have.  It was that powerful.

Dan and I needed this today.  We are trying to figure out what we are going to be when we grow up.  Praying for guidance. Asking God for a lighted path to follow.  “God doesn’t always tell us how he going to take care of us. But he has it covered.”  I heard that this morning in church.  Fits.

I need a nap.
***************

Sometimes, for long stretches of time, I forget that I am sick.  I can even forget that I wash my hair in the sink and hang it to dry.   Heck, I sometimes forget that I don’t have my wig on.

This last part of my three week cycle is the weirdest, I think, because I am almost normal again.   I can eat and drink normally.  I can think pretty clearly.  If it weren’t for me sleeping so much, I would be my old self - except for the baldness.  “Why is that weird?” you ask.  Because I am not normal.  I am not my old self.  I’ll never be that person again.  It’s just an allusion.

The worst part of the last week of the cycle is that I start to think about the hospital again.   The next cycle should start on Saturday the 26th, but that is Brandi’s 10th birthday.  We are going to ask to start on Sunday night. I have a week.  Why am I wasting my thoughts on next week?

These are the kinds of random thoughts that run through my head.  I can’t imagine anyone else is interested in these ramblings.

*********

I just came from the grocery store.  It’s actually pretty chilly here in Florida.  It’s in the low 50’s.  (Oh, no.  They have turned me!  No. no not yet.  I said it was chilly, not cold.)   The wind is blowing at a pretty good clip. I had to hold on to my hair walking across the parking lot.  How would one handle losing their wig to the wind with grace?

I wish I had the guts of the woman I met in radiation.  She had no hair.  Her makeup was done perfectly and her jewelry framed her face.  She wore no wig.  She was beautiful.

********
9:30p
I need your prayers more now than ever.  I am struggling with who I am.  And who I will be,  I am not perfect, not even close.  I need guidance.  I need knowledge. And sometimes I need duct tape for my mouth.  But first and most,  I need healing.  For my body as well as my mind and my heart.

I am human after all, Dr. H.    Go figure.

There is someone in my life that over the years has been charged with putting a human voice to the Spirit that tells me what-for and shape-up.  I received a call from my Jiminy-Cricket yesterday.   He never speaks sharply.  In fact, my dear brother-in-law, Greg, always speaks (to me at least) with a smile on his face.  I don’t have to have a video-phone to see that Greg is smiling at me over the phone.  See, he knows why he is calling. He knows what’s coming.  He is smiling that smile that the good kid gives to the naughty kid when he is sent into the bedroom to fetch him for the reckoning.  “Mom wants you! Your in big trouble now!”  Only it’s not my mom that wants to scold me.  It’s the Lord.  And the Lord’s sent the Holy Spirit and teamed him up with my brother-in-law to do it.  Not fair.  Really not fair.

Greg has a personal relationship with the Spirit. (They go way back . . .)  The two of them got together and plotted how they would call me and poke ever so softly at my heart and convict me of my shortcomings all the while showering me with genuine love and affection.  Not fair.  Really not fair.

Greg wanted to know how I was feeling, of course.  Since I haven’t actually told anyone how I have been feeling lately, it was a good place to start with a tiny little poke. I realize that I haven’t even talked about the symptoms I have been dealing with (except boredom) let alone how I actually feel about them.  Somewhere along the line, I stopped writing about my true feelings.  Poke poke.  I tell myself that some of my feelings, should they be made public, might hurt other people’s feelings.  I am not sure if that line of reasoning has merit or not.  Or if I talk about physical symptoms it might come out as complaining. . . (which I only do to my husband, bless his heart)  poke poke poke.

Greg proceeded to tell me how much he loves my writing. Poooookkkkkkkeeee.   “It’s like a book you can’t put down.” he says.  Only what he really is saying is that it would be nice to be able to pick it up once in a while and read it.  I tell myself that things have been slow lately.  I find it really hard to believe anyone would find my daily life interesting at the moment.  I spend most of my time here in my house.  Waiting.  Waiting for the next treatment.  Waiting for the last treatment.  Sleeping.  Waking.  Feeling my bald head and waiting for hair to grow.
You ever waited for hair to grow before?

Then Greg and his Partner said something that poked me hard . . . “It’s all part of your ministry.”

BAMB.  Big poke.

Writer, yes.
Christian Writer, OK.
Ministry?

That’s too crazy.  That is . . . Just . . . Too . . . I  don’t know.  Crazy.

I am just a mom and a wife.  I got hit with this “fluke.”   I started writing about it on the notepad of my cell phone two hundred and fourteen days ago.  I don’t know what to do with it now.   You know what?  This blog scares me more than the Cancer!

I have no doubts that the Lord will bring me through this cancer.  I am not afraid of the cancer.   But . . . What is coming next?  I am praying on this.

I know that God is using my story.  I know that if one person is saved because I got cancer, then everything I have been through in the past 214 days and everything I will have to go through in the next  . . . however long will have been worth the price.  I wish I didn’t have cancer. Oh LORD, I wish I didn’t have cancer.  But if it means that one person will walk through the gates of Heaven that otherwise would not have made it. . .  Then I will do it.  (Like I had a choice.)

So, I tell my story.  Is that a Ministry?

OH, Lord, why me?

I would not give this cancer to anyone else . . . But I did hear of Jesus casting demons on some swine . . .   Hint Hint . . . Lord?

Alright, on a medical note . . . I am doing alright this round.  Each one is different, I am finding.  I was able to drive faster and my appetite came back quicker.  I am more tired than I was last round which means my blood counts must be down.  I have no way to check that …  I have had more headaches.  I think the headaches are coming from my eyesight.  I am having trouble with my eyesight.  Had I know that I would get cancer this year, I would have gone to the eye doctor beforehand.  Now I have to wait until the Chemo is over before I get new glasses.   I don’t know if the weak eyesight is a side effect of the Ifosfamide and I don’t know if it is temporary or permanent.  But it is severe.  I can’t read the online cable guide from the couch!  That’s really bad!  Lol.   We see the doctor again on Tuesday.  My eyesight is on the list to talk to him.  I have a few things to talk to him about.  I want to know what is next.  What happens after I finish the Chemo.

I am also asking the Father the same question. . .

What happens after I finish the chemo?

“Woman Over-Bored!”

Yes, I am over bored. I guess there are worse things one can be than bored. But I am bored. I am getting tired of the whole cancer patient routine. I want to get on with my life.

This isn’t working for me anymore. I think I will not have cancer.

I just wish I had some hair to pull out. It’s that bad. I had a long talk with my mom yesterday about this. She understands. She spent time in my roll. My mother’s breast cancer kept her sidelined for a season. She understands how much one can hate their own house (even though they really love it) when you seem to be stuck there.

Take today for example, The day starts out great - I had a good night sleep and wake rested and ready for the day. I even took Dan to work so that I could have the car to do something if I so felt like it. (Having no means to escape is worse than having a car in the drive and not using it, see.) I drop Dan off and mentally start to plan out a fun filled excursion for one, when it hits me. “A rumbly in my tumbly” as Pooh would put it. Oh. Rats. OH

AHHHHHHHHHHH.

Home again, home again, jiggity-jig. And here I stay because should I venture out, I might get sick again. And then I sleep. AND THEN I AM AWAKE AGAIN !!!!!!!

But the car is in the drive just in case.

Meanwhile, I have been puttering with arts and crafts and watching TV. I actually finished the book I have been trying to read since my surgery in October! And I have been shuffling around the web. And well, that doesn’t make for good copy.

I am fine. It’s just that I am so incredibly BORED. It’s a good thing really. If I wasn’t bored, I could be . . . Much worse off. I am glad to prove Dr H back in Oregon wrong.

I am still mom.
I am still Dan’s wife.
And I am still human.

Just a sleepy-queasy human.

BTW: Happy BDay Uncle Pappa

Home again, Home again, Jig-itty Jig …

I made it through another treatment.  And I made it home again.  I actually think I did better this time.  And I did better than most (if not everyone) on my floor.  I kept busy with my artwork and I decorated my room with pictures of my four children and my signs of wisdom.  I decorated my Chemo cart so that I saw joy instead of ugliness.  And I prayed.

How do I feel now that I am home?  Tired.   Weird.  Slightly nauseous.     Glad to be home.   Wishing it was the last time to come home from Chemo.

I am going to hang out in my own bed tonight where nothing has an alarm to wake me if I doze.  I am going to listen to the sounds of my own family puttering around outside my room instead of the nursing staff.   I am going to give myself the permission to be weak and the time to get strong.  And I am going to enjoy the softest bed in the whole world.

I hope you can excuse my short post.

Everything is cool.