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I tell you what . . . We take being a normal human adult being for granted.  I had what I would have to call a “regular day.”   The kids and I woke up with eager anticipation of them actually starting school today.  Dad still had to show up at the School Choice Office with the latest needed paperwork, but we were sure we had just what they needed.  I ironed their clothes and helped Jaymi make some shoe charms for her new shoes.  (Evidently, they are all the rage here in Florida.)  As I was getting them ready, Jaymi looked up at me and said, “I love you, Mom.”  And her face said one hundred times that of her small words.  “I’m still mom.”  I said to her.

It felt good to be mom.

Unfortunately the phone rang and Dad didn’t have the news that we expected.  Turns out that there was a “new missing paperwork of the day” for Wednesday that no one told us about previously.

“You have got to be kidding!  I can’t believe they can come up with another missing something!  Why didn’t anyone tell us before?  These kids need to get in school!”

“Ya, I know.  I’m here, ah . .  I’ll call you back. . .”

So they could hear me ranting.  They should know that it is ridiculous.  Enough is Enough.  Dan called back a few minutes later.  They needed a fax from the old school about the speech classes that both Brandi and Robert have been in.  But the old school is three hours behind the new school.  They are still in bed out there.   And when the fax comes in it has to be routed to the correct department. . .  Whatever.  It would take all day to fix, but they should be able to get in tomorrow.

“Kids, school starts . . . Tomorrow.”

They moaned. They groaned. They changed their clothes and went out to play.

I then looked at the bananas that were getting too ripe in the bowl on the table.  I made frozen chocolate banana pops.  It took most of the morning.

It felt good to be mom.

Then it was noon and I took a nap.  It lasted through my soaps. Hehehe.

It felt good to be a patient.  Hahah

Speaking of being a patient. . .  Yesterday, I had the port inserted.  It went easy.  I was given conscious sedation but I never fell asleep.  It was weird, but I didn’t feel much and I came out pretty fast.  Today, the site is sore.  It is about two by two and under my skin. There is still a day or so until I can take the bandages off and see what is there.  I can’t do anything strenuous or lift more than ten pounds for the next two weeks.  No cleaning, cooking, driving.  It is harder than you think NOT to do the same normal things you have always done.  I couldn’t even carry my own purse out of the hospital.  It hangs on my left shoulder.  Always has.  That is the side with the port.  I use my right hand for my cane.

It’s all about finding a new way to keep living.

After the port placement, we made our way to the Thoracic Clinic to meet Dr.W, my new primary Oncologist.  They “fit us in” so it took quite a while to make his acquaintance.   We liked him.  As he was listening to my experience with the Chemo last week, he ask if they gave me some blue fluid.  A Methylene Blue?

“No, I don’t think so.”
“No one put a blue bag on your IV?”
“Ah. . . No.”   I scanned back through the log my family had kept of my treatment and there was no mention of Methylene Blue.
“Hmm. Well from the sound of it, you didn’t tell them what was going on until late in the treatment.”

He gave me a look that I had seen before  . . . on my late father’s face.  One that kinda said, “Duh” and “Dummy” at the same time.  I gave him back the look I would have given to my dad.  We were bonded now.

I like this guy.  He knew right away what could have been done.  We talked for awhile.  He looked at my scans.  The mets (metastatic spots) in my lungs are spread out too far to just remove a lobe and have them gone.  And every time he saw that one had grown he said, “Ok, good.”

“Good?  It’s good they are bigger?”  Dan had to know.
“Yes, this chemo is more responsive to aggressive tumors.  After at least one more round. . . “ And he gave me that look again . . . .(ppfft) We can do another CT Scan and see the changes.  If the spots get smaller, we know that it is working.  If not, we can at that time do something else.”
“But this Chemo is the best for now?”  Dan was scared of offending me, but he wanted me to hear it too. . .
“This combination of drugs is best.  We can drop the Ifosfamide by 50% and add the Methylene blue to counteract the neurotoxicity.  It should work.  We will watch closely this time.”   And the look.  One more time for good measure.  Man, this guy is good.

Oh.  Oh poop.  OOOOOO K.   Methylene Blue.  “Why didn’t they know about that last week.”   I will do what I have to do.

Here is what Wikipedia says about Methylene Blue and Ifosfamide:  Click on the blue words.

Methylene Blue for treating Ifosfamide neurotoxicity    (Scroll to the section starting “Medicine” and then about six paragraphs down from there.)

It was late when we left the hospital.   It takes two and a half hours to get home.  It was 9:00p when we arrived.  My mother had the children at our house.  She had kept them since Monday afternoon.  She looked as tired as we were.  Actually more.

My kids were a site for sore eyes.  And they held to us tight.

It’s hard for people to look in at us and understand what has happened to our family.  First of all, we left one of us back in Oregon.  Yes, Kelli was already an “adult” and living on her own.  But we were living with her on her own in the same breathing space.  It’s a long way to her house from here.   And we are living a life we didn’t ask for now.  We are grateful and blown away by the way people have come together to make us a home.  It is more than we deserve.  More than we expected.  More than we need.

What we are hurting for is the time we spent together before.  We are missing being able to run here, do this, play over there and come home.  Our lives are not happy-go-lucky.  Not many people have a free life, we understand that.  It was special just to be home and awake and  be able to iron the kids clothes this morning in the hopes that they would wear them for school and that I WOULD BE THE ONE TO SEND THEM OFF TO SCHOOL IN THEM. How selfish is that?

We want to be normal.

Tomorrow, the kids will actually start school.  For real!  There is no bus because we live closer than two miles.  I can’t drive them there or pick them up myself.  They are not old enough to walk.  There is a main busy four lane road between us and the school.  School starts at 9:15a and is over at 3:30p  Dan will have to drop them off and pick them up.  And work.

We are missing being normal.

It will just take a little time, before we create our own “normal.”  It’s not going to happen over night.

Tomorrow, we are selling Clyde.  Bye Clyde, it’s been real.  When Clyde drives off into someone else’s sunset, our new sunset will be permanent.  Haha    As permanent as anyone’s sunset could ever be.  Life is about change.  And each life is individual.  What is normal for one person is not for the next.  No one could ever step into the life of the next person and get it right.  No one else’s buttons are in the same place.

We’ll find our buttons.  Don’t worry.

There is one more thing that I wanted to talk about.  I didn’t sleep well over night Monday.  We were in Tampa in the motorhome and I was waking every hour or so.  About 6:00a, I was in the potty and had a long talk with the big man upstairs.  Hahah.  Ya, you can talk to the Lord in the potty.  For goodness sakes.  I came out with it, “Lord, I don’t want to die.”  The first chemo didn’t go so good for me and while I was under it’s spell . . . I didn’t think I would be leaving the hospital.  And if I did, I assumed that I would leave someone less than I had been.  My eyes were clouded by the gunk in my veins.  I lost the view the Lord wanted for me.    I am bawling now to even write this.  I was afraid when I left the hospital to see my children.  Or I should say that I didn’t want them to see me.  I was afraid that they would see that I was no longer who I used to be.  I lost my hope.

“Lord, I don’t want to die.”

I am not going to die.  Well of course, I am going to die, but not from the Ifosfamide.  And not just yet.  (We are all going to die.)  I have a testimony.  I have a job to do here and it’s not done yet.  I am not jumping into a snake pit and getting healed. . . You can settle down.  I have a long hard battle yet ahead of me.  I do however, have a story to tell about faith and love and giving and receiving (which can be as hard as the rest).  I have to keep telling it.

God is good people.  Life is hard, but God is good.  You can rest in the love of the Lord.  Have faith. Faith brought my family across the country when most thought we would end up in Poe-Dunk, Texas for ever and a day.  Faith will pay the bills here in Florida, too.  It will be all right.    We will have what we need, if not what we want.

Faith.

I faltered with this Ifosfamide debacle, but the Monster hasn’t won the war.  Besides, I read the book.  We win in the end.