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Hi everyone, it’s Dan again.

Teresa is just to tired right now to write anything and I know plenty of you want to know what’s going on. She’s okay, it’s probably the low red blood cell count making her tired, it will come back up this next week. She has regained her appetite, I know this because she’s eating the food I’ve made.

Clyde is gone, God put this man in my path right after we got here and let him get a great deal on Clyde. Goodbye Clyde, we will miss you!

In other news, “The Kid’s are in School!” They started school on Thursday and to say the least, they were excited.

The new school

I think she may be up to writing something tomorrow, we will have to wait and see.

God Bless.

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.

Hey there!  It’s ALMOST me again.  Geez, I read through that last post just now.  I wasn’t out of it yet when I wrote that.  That was a downer!   But I was out of it!

I just want to say again, however, that this is only my case.  My cancer is ugly.  Sarcoma is rare and the treatment is harsh.  The dosage of the drugs they gave me probably would not be close to what they would give you should you need it.  BUT-  never, ever lie to the doctors about what is happening to you.

That being said, I feel better.

Dan and I are in Tampa staying overnight in the Motorhome.  (It’s not Clyde!  Don’t feel sorry for us, really!)   This morning I came up to Moffett for two shots.  Neulasta -used to restart the infection-stopping white blood cells pumping, and Aranesp -used in the same manner to rebuild the energy building red blood cells.  Both red and white blood cells are depleted after chemo.   These shots are given 24 hours after chemo.  They are expensive.  $3,400 each, I am told.  Pheww.

There was only one shot waiting for me; I received the Neulasta.  Evidently, to qualify for Aranesp, your hemoglobin count must be below 11.  (I know I should look this up and give you all the science behind the counts, but . . . it’s a story not a lesson.  Google it.  Hahah   Yah, I’m back.)  In order for the shot to be paid by the government, and therefore by the insurance industry who follow the governments lead, your count must be below 11.  Mine was 11.  I didn’t get that shot.   But looking at it another way, my counts weren’t low enough to warrant it.  How’bout’dat?

This was accomplished by 9:30a.  Our next appointment is tomorrow at 11:00a.  We were headed to the motorhome when we got a call from Anita. My sister was playing Awesome Aunty today and was charged with finally getting the kids registered in school.

YES, I know you have been waiting for that story, Pheww.

Back in the late ‘90’s, Lee County Florida had the idea to let parents choose which school they sent their children.  It sounded like a good idea.  Public schools would have to shape up and get competitive with the neighboring schools in more than just sports.  YAH!  Give the parents the right to say NO! My kid is not going to that crappy school.

Now, I come home to Florida with these three little kids who need to get in school, and it is harder to do this than I would have ever thought.  In Oregon, we lived in the neighborhood, the kids went to the neighborhood school. In Lincoln City, Or, we showed up at the neighborhood school and said, “Here they are!” And there they were.

There is a school across the street and around the corner.  We assumed . . . We may not get to go to that school because we are having a hard time getting the proper paperwork in order.   We really thought we had it this morning.  Aunt Nita even spent the night with us last night so that she could be with the kids this morning to get them and their paperwork off the school choice office and on to the school of their dreams. IF we get the paperwork in to the office today by 4:00p, there might be spots in the school across the street for each of the kids to have one.  In the same school.  That would be good.

Lo and behold, some of the paper was made from the wrong stock and, long story short, Auntie Neetie was stuck with three little hooligans for the day.  Now they will have to wait until we get home on Wednesday to see if they get to go across the street.

To console them, Aunt Anita took them all for shoes.  Maybe I will wait and let her tell you that story.  “How long has it been since. . . “ My wonderful sisters have been spoiling these kids rotten.  I tell you the truth.  They never come home with just what they set out with.  But you know, these kids have been set on the back burner since the beginning of the summer.  Every extra went to me.  They didn’t even get new school clothes at the beginning of the year.

They didn’t complain.

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This morning at 10:45a, Dan bought me a foot long Club from Subway.  Over the course of the day, I ate the whole thing! I finished it at dinner.  It was the most substantial amount of food I have had in one day in a week.  Actually, it might be more than I ate all week.  I was a very good girl.

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

Hey, it was Kelli’s birthday this past weekend.  I am the proud mother of a bouncing baby nineteen year old girl!  My Love.

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

Getting late and I’m winding down.  Tomorrow I get the port in my chest.  Think of it like a spigot to my heart.  A (removable) permanent IV line.  It’s considered a surgical procedure.  Then we see Dr. W.

And get a new plan, Stan.

Until then I am going off to watch TV in bed here in this coach.  We have finally pushed every button we could find.  (HAHAHA  just kidding there, Dick.) It is a bit more complicated in this motor coach than in old Clyde.  Spent most of the afternoon on the phone with my brother-in-law . . . “The hot water button is . . .” And with Anita, “Make sure you unbutton the curtain’s tie-backs before you hit the button to close them . . .”

And I won’t even go into the Satellite problem that wasn’t. Had to get a tech to let us know it was us.

Tomorrow’s another day.  Full of power.  You’ll see.  An new plan.

8:00a
It’s Sunday. I am home. Dan and I are trying to find something I can eat and keep down. I am afraid it’s trial and error at this point.

This first course of Chemo didn’t go as well as we expected. Not that we expected it to “go well.” We won’t be repeating this particular recipe.

We knew it would be harsh. “They” put you in the hospital to administer it. They know it will be harsh. This concoction included two different Chemo drugs. Doxorubicin (AKA Adriamycin) and Ifosfamide (AKA Ifex) along with another medicine named Mesna (Mesnex) used with Ifosfamide to protect the bladder.

The Doxorubicin is red. In smaller doses, both my parents had this chemo. Neither one of them handled it well. We were afraid of this red chemo. This chemo came in three bags that dripped for 24 hours each.

The Ifofamide was the one we needed to be afraid of. It came in four bags and took three hours for each bag to drip. One bag per day. Each bag started at around 8:30p. I didn’t make the forth bag.

Please keep in mind that this is just my own experience with this drug. And keep in mind that I have always tried to put the most positive spin on this Monster Fight of mine. But I can’t do that here. Just trying to remember it enough to write about it is making me feel nauseous. Not that I wasn’t nauseous, but it wasn’t that . . . It was the hallucinations. It was the tremors. It was the disconnection from reality.

I’m gonna take a break. . .

12:30p
It was a long break, during which I took a long nap, woke and put a few things away and made the children do some work. After some research online, Dan went to the store to find something I would eat . . . (It turns out grape tomatoes might work out.)

I was telling you about the chemo. I had planned to tell you all about the hallucinations in detail, but I find that I’m just not up to it yet. I will tell you an almost fatal mistake I almost made. And that was to try to hide what I was going through for fear they would take away the drugs I felt were my only chance at survival.

After the second bag of Ifosfamide, things started to go awry. I didn’t like the way I was feeling. My hands couldn’t type and my eyes were jumping, tunneling. The doctors came in on rounds and looked me over closely. They were wondering if I should continue the treatment. I heard in my head, “We need this Treese. Don’t let them take it away.” And so I covered. I told them it wasn’t so bad. I have been hiding my Fibromyalgia to some extent and it was something that I could hide this.

They hung the 3rd bag.

Now behind my bed in the wall was an old monitor system for calling the nurses station. I was told that only half of the floor was still using that old system. My room was on the new system - the speaker of which was built into my bed. Sometimes, however, sounds and calls from the other side of the floor would bleed through and I I could hear them coming from that old monitor. I know that this is real because other people heard it too! Haha
The problem is that the sounds and calls coming from that monitor started to get more common and louder. When the people started entering my room from that monitor, I knew I was in trouble. There was a doctor that I knew was not real, but in my room just the same attempting to put another bag on my IV. I couldn’t figure out how to get him to stop and go away without telling my mother who was in the room with me that he was there, see. Stuff like that. But worse.

In the middle of the night, I had a shower. I know the nurse had to have really been helping me, because to have a shower I needed to have my IV lines pinched off and covered with plastic. I think it was a long shower or a few showers . . . I don’t know. My mother helped me find something to wear afterwards, I think.

By the morning, my eyes were wrapped in tunnels of light shooting through the universe. I had given up on my computer and eating anything was out of the question. I was battling the people from the other monitor and all sounds had a dancing shape to them. The first doctor came in. I heard again, “we have to have this medicine.”

“I am better” It was what I could get myself to say clearly. “Better than yesterday.”

When she would ask how my tremors were, I said “Better.” My eyes? “Better.” I held it all in.

“OK then, I think we can go ahead with the last bag of Ifosfamide.”
Yippee.

As soon as she left the room, I started to retch. I fell apart and started shaking terribly. My mother was scared. I told her that I hadn’t told the truth. I told her that I was in bad trouble. “You have to tell them the truth. I know this for fact.”

My mother’s first chemo treatment didn’t go as planned either. I sat with her on a Friday as she got her first injection including the red stuff. I had to fly home in the middle of the night on Sat/Sunday. I didn’t know it, but my mother didn’t remember sitting with me at 3:00a and talking. She was on her way off. I flew home and she flew over the coo-coo’s nest. By Monday, she was in the hospital. Where I already was.

Mom went out to find that doctor and told her that I was lying. And I will always thank her for that act of kindness. When the whole team came in, I admitted what was going on and they all told me that it was stupid to be that desperate. There are other treatment courses. There are new trials. There was no use in toxifying my body to the point of destroying what we are trying to save. They would not hang the forth bag of Ifosfamide. They would let the last of the Doxorubicin drip through as well as all the detoxifying medications they had to get the rest of the side effects out of my system. They would hang the last bag of the Mesna for my bladder as well. They just were not going to give me anymore of the Ifosfamide. Pheww.

My sister-in-law Lisa and her daughter came in to relieve mom late that morning. Lisa watched over me as more of the side effects danced off in their corners. Dan came in by 8:00p, I think. He spent the night and took me home on Saturday. Dan and I have to drive back up there on Monday for some shots for my red and white blood counts. We’ll stay over in Anita’s motorhome and get ready for my port placement at noon, Tuesday, and a visit with a new doctor later that day. The new doctor will have a new plan to discuss. One that may include the Ifosfamide but at a slower pace. But I don’t know . . .

I am feeling better. Still shaky. Still figuring out what to eat . . . How to eat. I have lost thirty-eight pounds since the end of my radiation.

Would have been better to go to JennyCraig.

Hello world, it’s me, Dan.

I am at this moment 120 miles away from my Teresa. We did not want the children to be without the both of us all week so i came back for a couple of nights. Thank God for family that is there with her while I am gone.

Yes she is sick, she is scared, but she has faith. She knew that it was going to probably be like this but you can never prepare yourself for it. My Teresa is a fighter and she will come through this.

Let me back up a bit and give you a little more details of the past week.

I was able to start work on Monday! But it only lasted one day. That’s why something like this can be so hard on a family not just financially but mentally. Anita took Teresa up to Moffitt on Monday for the CT scans and to meet with the Doctor. It was so hard for me not to be with her at that meeting but I needed to work. The results are what we expected, but not as much as what they found. I need to clarify here: Teresa does not have Bone Cancer or Lung Cancer! It is a Sarcoma Cancer that has Metastasized to the bones and lungs. There is a difference, and it is treated different and has a better chance of reacting to the Chemo then being one of origin. I am not kidding myself, it is going to be a battle.

So the Doc decided to start the Chemo the next day, caught us off guard and scrambling to arrange things. Thanks so much to Anita, Juanita, Pam, Lisa and all the rest of the family that is there to take care of the kids and other tasks and chores that needed to get done. Teresa and I headed up on Tuesday to check into the cancer center and get this thing going.

Wow. This is not your everyday hospital. It felt like we were checking into a hotel. We went to admitting and after being there for only 10 minutes we were told to go up to her room on the 4th floor. We walked in to the nurses station and they said “Go on in you know where to go”. The problem is we didn’t. We told them it was her first time for the Chemo and the showed us in to a large room with a nice shower. Then they showed me the family pantry with the filled fridge and cupboards with soda’s, soups, cereal, etc. (I liked that part). Teresa can wear her own clothes and walk around if she is up to it. They brought in a cot for me to sleep on or whoever else is there. But that is not what makes this place special, it’s the care. When Teresa was at OHSU we had battles with nurses that thought they knew more than the Doctor’s and didn’t want to give her the pain medication. The attention you get here and the concern is second to none. One nurse or Doctor after another came in and really did listen and care. The Pharmacist came in and sat down with us and explained all the medications she would be getting and what to expect and what they can do to adjust it to make her more comfortable. (She did sugar coat the side effects of the Chemo). So that brings us up to the moment now. Teresa is on the 3rd and last bag of Chemo that will end tomorrow night, the 2nd Chemo drug is given for 3 hours a day and will end on Saturday morning. With that I will be able to take her home around noon. Because of our Medicaid pending Teresa will have to go back on Monday for 2 shots that will boost her red and white blood count. About 7 days after Chemo the immune system is about nil and you need all the help you can get to fight off infection of any kind, so these shots are very important.

The Chemo treatment will start every 21 days and takes 4 days to administer. That means she will be back at Moffitt on the 10th of December but home for Christmas! Dick and Anita have brought their RV up to a campground that is only 7 miles from the Cancer center that can be used by all of us as a home away from home. God Bless you two.

I will head back up tomorrow and stay the night and then take her home. Meanwhile on the home front the kids will start school at the beginning of the week. They make it very difficult to just enroll them in school quickly, physicals, immunizations, and school choice slows it all down. I have noticed that the little ones are having some difficulties coping with the situation, all I can do is try to be there for them and let them know how much they are loved.

My wife and my children are my world. I can’t stand to be apart from any of them for any time. Saturday we will all be together again. I love you Treese

Happy Thanksgiving!

I have found that it is too hard to type while on this medication.  The Chemo is causing side effects that are not fun.  I am throwing up for one thing.  For another, my hands are shaky and I have to use backspace constantly.   I am sometimes loopy.  And sometimes coherent.  This is crazy stuff.

I will be completing this cycle on Saturday and going home.   I have to comeback on Monday for a couple shots and Tuesday I get a port installed in my chest.  Between now and then I will try to write more.  Or someone else will write for me.   But I wanted to let you know that I was thinking about you and am thankful for everything you have done for me and mine.

Love to all
teresa

I am a bit nauseous and loopy. And very Tired! I will be getting some new blood here in a few minutes. I am turning the floor over to Anita! She has something good to say —teresa

Anita:

THANK YOU THANK YOU THANK YOU THANK YOU THANK YOU

O MY GOSH!!! Thank you, To everyone that helped us get this far. You are all INCREDIBLE people. I have never ever been so awe stricken at the love and generosity of our friends and their friends etc. Our family is a strong one, maybe not real attentive on a day to day basis. But when a crisis exists, we are strong. But this crisis was way bigger than anything we could handle alone, and there you all were.

There is a special group of people that I would especially like to thank. They work with Lisa. We will call them LH angels. You are an exceptional group, and I am so grateful to you. Lisa has driven up with a full Suburban on several occasions, and enough money to get them across Texas You are all strangers to our family, but our Lisa must be pretty special to all of you as well. You are great friends. Thank you again. Please add my name to the next corporate email.

My dear and close friends have been my ROCK!! Lora and Vickie are glued to me I think. They are aware of my every movement, and thought. I just sat a moment and thought of those two. WOW. I could not have gotten any of this accomplished without them. Thanks, I love you. So many other family and close friends,Dick~( my wonderful husband), Lisa- there for everything& Kim (my daughter-n-law), Pam (my sister) going dumpster diving with me at 2am lol, Mom & Pop, Georgana, Linda, Lou & Bob, Jimmy, Bob, Steve, Ed,Makenna, Katie, Kylie… etc etc… I love you. You are always there if I call, and emotional support comes on a daily basis.

There is a special lady that I met on the phone. I actually bought some bedroom furniture from her ad in the newspaper. The angel network is a really, really strong connection. Not only did she lower her price on the furniture so much that I could afford to give Teresa a glorious king sized wrought iron bed to heal in, she sent bags of clothes home to us as well as games and toys for the kids. (That was one of Joe’s list of pick ups last Sunday) Not only all that, her church group is sponsoring the family for Christmas…., right down to the tree. DS… God Bless You!!

To all and everyone, I thank you from the bottom of my heart. We got them across the United States. almost 3800 miles. We put gas in their tank, we fed them, and paid for their RV parking. We fixed Clyde when he broke (thanks mostly to Dan’s mom Inez) We found them a Van, went to Indiana to get it, found them a rental house…… cleaned it- furnished it-hung some pretty pictures on the wall, put toilet paper on the holder, salt & pepper in the cabinet- made 2 tubs of baked spaghetti ( my sweet granddaughter’s did that) opened the door when they completed the trek of a lifetime with Clyde, and held out our arms in love and support to bring them inside with us.

All of us… you included.

Trees~ we will all help to take care of you honey. Now just FIGHT and kick some butt……….

I love you Sis, Anita

Well, Ladies and Germs,

The moment we have all been waiting for has arrived. I have been invited!

The Cocktail Party will begin in a half hour. I am all dressed for the party. I have my place at the bar and a room booked for after the show. I am filling up on water, you know practicing for the main event.

I am Here BABY!

Chemo

I was admitted to H. Lee Moffitt Cancer Center this evening after a couple days of testing. I saw Dr D yesterday. She wanted to get started right away. The Chemo Drip will start at 8:00p.

That bone scan?

Well . . . There is a bit more in the bone than we expected. We knew there were spots in the hips and femurs. The pain that started in my right arm Sunday morning was also explained. As was both shoulders and the spot on my forehead that felt like a bruise for about a week. (That spot is on the cranial bone and not in brain tissue.) There is also a length of cervical spine- that’s in my neck. I didn’t feel that one. Really, didn’t expect it.

The spots in the lungs have grown too.

Time to execute the next attack. I just really got settled in here and they are coming with the drip in just a few minutes. I will be here until Saturday lunch. I am assuming I will be able to write. And I am assuming you will be able to read it (although I understand I might get confused and goofy! lol). So, I assume we will get back together here soon.

Keep the prayers flying!

t

As promised!

We’re headed back up to Tampa tonight. I will check back in with the news as soon as possible.

Love ya

t

9:00a
I did write yesterday. I started to do it anyway. But (there is always a “but” if not a “butt“) We had dinner at my mother’s house. When we reached home again, I set out to write and then was treated with a visit from a long lost nephew. Dan’s nephew, Sean, knocked on the door last night. It was in that time of day where you look at each other and say, “Someone coming over this late?” It’s the time of day where either the person at the other side of the door is someone you love or the police.

“Sean!” He looked so much like his father. We hadn’t seen him since he was a kid. Sean is a twin. And a new father. And a long lost kid of mine. Technically he is Dan’s brother, John’s son. But I will claim him. We visited with Sean until I was too tired to type. Here’s what I did get out:

Day 154- Friday, November 16th, 2007

9:00p
I didn’t do much today, but what I did do, I did with gusto!

I slept!

I slept in until almost 8:00a. By 9:00, I was ready for a nap! I slept on and off all morning and into the afternoon. I guess I needed it. When I finally woke completely, I set my seat in an upright position and prepared for landing! (That bed is so high off the ground that it comes with flight instructions!) The children (who are not yet enrolled in school - another part of the story to be told) had been lying around watching TV while I slept. I put them to work.

(Saturday again)
Sleeping seems to be the best thing I do these days. I don’t think I have recovered from the Clyde-Ride here. We have until tomorrow to empty Clyde and move him. Cape Coral has strict restrictions on what you can and can’t park and where. Clyde will be moseying down the road (without me) tomorrow afternoon. Pam and her hubby Chris have graciously offered to house the motorhome until we get it cleaned and ready for sale. They do not have the restrictions in their neighborhood. Pam can also help to show Clyde when we get’m listed for sale.

Yesterday, as you read above, I slept. When I woke up I set the children to emptying the motorhome. The rule was “Get it and put it away.” It didn’t work just as I had imagined. There were things setting just about everywhere.

“When is Aunt Lisa coming to pick you up tomorrow?” Aunt Lisa answered the question herself as she walked in at just the same moment. (The kids thought that was pretty cool!) Lisa will be picking up the kids to add them to other kids (including my brother Joe hehe) for an ice skating birthday party for their son, Joey. Joey is just a bit older than Brandi and has just turned ten. (Brandi turns ten the end of January.) My kids have never ice skated. They have moved 3,700 miles from the Pacific Northwest to sunny & tropical Florida to learn how to ICE SKATE! Go Figure. Lisa brought in more than the answer to the skating question. She had her arms full of clothes for the kids. And a gift card from Walmart. Amazing.

When she left, the kids thought they might call up one of their other Aunts by mentioning their names the same way Aunt Lisa came in on call.

“Aunt Pam.”

It didn’t work.

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11:15a
I was telling you about our week. See I didn’t forget, I just got sidetracked.

Tuesday we worked around the house. Although we could live forever with the contents as is, we have to get the motorhome emptied of the things we brought with us. Dan and the kids brought things in and between my naps, I put them away. In the afternoon, we went to Anita and Dick’s house. They live in an RV Resort Community. While we were there, we were blessed to meet in person Georgana and Steve. I felt I already knew them both from the stories about them and from the emails we shared. Robbie and Georgana hit it right off - literally. Robbie jumped into her lap and there he stayed until we had to leave. We were lucky to get to meet Georgana and Steve before they took off to visit their grandchildren for the holidays. I look forward to spending more time with them when they get back after Christmas.

We headed back over to Anita’s for dinner. And afterwards Vickie and Jim came over. These guys I do know from their long friendship with my sister, but it had been a long time since I has seen them. They have been a huge help setting up our new home. And, it was their daughter, Michelle’s car that Dick and Jim drove to Indiana to get for us. They, too, are amazing people. When the car arrived, it was filled with toys and school supplies for the children - sent from Michelle’s children. So cool!

We are surrounded by a vast network of wonderful people.

By the time we were back to our own house, I was crawling in my bed again. And Tuesday was over.

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6:300p
We just got home from a busy afternoon. The children had a blast with Uncle Joe and Aunt Lisa at Joey’s party at the Ice rink. I hear the three of them were quite the sight. And Lisa predicts that they will sleep early and soundly. Go Lisa!

Dan and I, along with my mom and step-dad, spent the afternoon with Anita at her Salon. She has a new shop at FLeaMaster’s Flea Market. In Florida, “Flea Market” means “Kiosk Mall.” A Mall made up of just the Kiosks that float around the regular mall’s hallways. We had a blast. It was nice to get my mind off of . . . things, you know. Anita and I searched other booths for fun decorations. Dan rented me a scooter for an hour. Man, I forgot what it was like to move around fast! I need to get me one of those!

I was telling you about the week and I think I am up to Wednesday . . .

Wednesday . . . That was a l -o -n -g day.

Anita picked me up at 5:30a for the trip back to Moffitt for the bone scan. Neither one of us are a morning person. We picked at each other and laughed it off. We’re pretty good at that. When we got there, I decided that I wanted to use a wheel chair. Now I know that I don’t NEED a wheel chair yet, but the longer I can keep the pressure off my legs the longer I can last during the day. If I wheel around, I can stay awake longer. I chose what I thought would be a good one from the chair lot. There were a lot of wheel chairs to chose from. This one looked pretty good. I hung the duffle bag I brought along on the handle bars. (I had my laptop, my medicine bag, my medical records, and the welcome packet from the first day in there. It was heavy. This was another reason that I wanted to use a chair. . .) All set. Let’s go.

And here was the problem.

Those of you who know me personally, know that I am . . . we can say “stubborn” without ruining my reputation. And I kinda’ like to do things my way and for myself so “independent” would be another good word for me.

Except that . . .

My sister is the one who taught me to be so . . .Independent. AND SHE IS EVEN MORE . . . INDEPENDENT . . . THAN I AM! (Yes, you are! mwack!)

I wanted to roll myself. Anita wanted to push me. Then I was tired of rolling myself. And Anita didn’t want to push me anymore.

Well, that is not exactly true. Anita wanted to push me . . . OFF A CLIFF!

I don’t know why she got so upset with me! I wasn’t as bossy as she says I was! I mean it! Who are you going to believe, me or her? OK, well I won’t make you take that side, but I wasn’t that bad. (no comments from the peanut gallery!)

However, I guess Anita thought it was time to teach me a lesson.

I should tell you that Anita is fourteen years older than me. When I was a baby, she used to play house with me as the doll. Then, as I grew she forgot to forget that game. Once I learned to walk, it was her job, as the oldest child of six, to chase me down. When it got harder for her to keep me in line, she employed a wooden spoon with my name on it! I learn to be pretty fast — she chased me all over with that wooden spoon! Even after she married and moved out, she still hung on to that wooden spoon. One day, she couldn’t find it. Hehehe But even though she no longer had a spoon, she still had control of my happiness. Hahah When I was eight, she married Dick. He had three children. All my age or older than me. Now I was really seen as one of their children. (Except when I ask about the will . . .but anyway . . .) Now that I am a middle aged woman, Anita and I have been more sister/friend than child/guardian. Except now . . . I am no longer an adult, see. And she is once again my guardian - in her mind.

So. . . The lesson.

“You have to either push yourself or let me push you.”
“Why can’t I push some and you push some?”
“I doesn’t work that way.”
“Why not? Just let me push myself sometimes!” And I didn’t say it in the tone of voice that SHE tells this story in. But this is MY BLOG . . . lol
“Fine. Push yourself.”

Now at this point, we were about to head into the elevator. Fine. I pushed myself in the elevator. Anita walked in behind me. There were two other people in there already when we entered. (Poor timing on their part, I would have to say. . .) When the door opened two floors later, Anita exited the elevator the same way she entered it. Now, I was still facing the back of the elevator so I couldn’t actually see Anita, but I know her well enough to know what her posture was out there in the hallway. Arms crossed, one leg out straight, one foot tapping the ground. And I can tell you the look on her face too! Lips pursed and eyes rolling. I have been a mother for nineteen years. I have eyes in the back of my head, see. And I have been her sister for forty-one years. I knew exactly what she was doing.

I looked up into the eyes of the poor suckers stuck in the back of the elevator. They had a look of someone who knows that something is going on, but they just didn’t know what. I started to back up. I missed the first time . . . You know driving a wheel chair is similar to driving a boat: want to go left you pull to the right . . .

I was never very good at driving a boat. . .

The second time I hit the other side of the elevator door, which was a good thing really, because I was able to keep the door from closing on my duffle bag hanging there on the back handles (where my sister’s hands should have been by then, saving me from total embarrassment. . .huh hmmmm)

I had to roll forward back into the elevator now to get back in line with the door. I didn’t even come close to those people in there, geez! But when they squeezed themselves against the back wall, it did give me more room to maneuver. When I looked up to say sorry, I saw them look out to the woman that entered the elevator with me to help them get out of the situation they now found themselves in. See, they didn’t know my sister. I, on the other hand, knew without wondering that she was still tapping her foot. But this time she was looking down at her tap-tap-tapping shoe as if she didn’t even know me. (mom, eyes remember. . .) She wasn’t even going to help me out of that elevator and she loves me! Those other people had no chance except to get me out of their way themselves.

“Ah, should we help you?”
“Nope. I will get it on my own.”

I was now sporting a look myself. It was similar to the one my sister had been wearing only I was gritting my teeth as well. Anita was trying now not to laugh like you have to do when your kids do something they shouldn’t have done, but it was really too funny . . .

With humiliation aiding my determination, I grabbed both sides of the wheel and pulled as hard as a weight lifter spinning the big wheel on the Price as Right. It was either luck or divine intervention that I went in the correct direction, but the people behind me in the elevator saw their opening and ran for it. (It was good that the CancerMonster they were battling was not in their lower extremities . . .) Run, Forest, Run!

The force of the spin turned the wheel chair as it flew backwards so that I came to a stop against the now not tapping foot of my dear big sister.

“Are you happy?”
“Yep.”
“You had to humiliate me just to teach me a lesson?”
“Yep.”
“It didn’t work.” hahah But it did. And she knew it.

And worse than that, I knew it.

I turned the chair around, gracefully I might add, and headed in the direction of the radiology department where three hours before I had gotten an injection of bone glowing juice. In silence, I might also add. When we got to the waiting room, I looked at my sister, who was looking at me, and we both burst out laughing! The people around us that had not heard about the crazy ladies out at the elevator, were thinking that Moffitt must have a mental ward somewhere they hadn’t heard of.

And that in a nutshell, is my relationship with my big (and very much OLDER -revenge tastes sweet . . .hehehe) sister.

I was soon called to have my bone scan. A bone scan is not so bad, as scanning test go. There was no tube. There was a sliding slab. I wouldn’t let them start until all my bumpy places were pillowed enough to lay still for an hour. Then a big square camera took turns sliding about with the slab and I actually dozed off. (I found out each time that I fell asleep by the snort that woke me up.)

When it was all done, I was still very tired and groggy. Anita looked me over and grabbed the handles. She pushed and I let her. I was very done. And she took the controls. The ride home was, as these things usually are, longer than the way there. Anita stopped several times so that I could stretch and work out the pain in my right hip. I had extra medication this time, so I didn’t cry my way home like before, but it was a tough ride anyway.

This next appointment on Monday will be a long one. However, my dear and fantastic sister and her unbelievably wonderful husband (kiss kiss) are taking their motorhome (which in no way whatsoever, resembles Clyde, by the way) and me up to Tampa on Sunday night. They will leave it there in an RV park there for the next month or so. If and when we need to be there too early in the morning like this Monday, we can drive up the night before. And when the chemo starts, whoever is there with me will have a place to crash. How relieving is that.

How’d I get so important? Crazy.

**********

Dan is upset that he will not be there with me on Monday, especially for the visit with the doctor. Remember that Dan has been my rock throughout the fight this far. We moved here so that my family could help HIM. He knows this in his mind. But his heart says he just wants to stay by my side every single step. He is starting work on Monday with my brother, Joe. He needs to be back to work. But he also needs to be with me. Dan is under a rock on this.

He’s the love of my life.

It breaks my heart that I didn’t see until tonight that by trying to spare him the pressure of both providing for the family and caring for me, we have taken something huge away from him. He is scared. The stakes have changed. And so have the tactics for the fight. He doesn’t know where to stand. He hasn’t figured out that this move was for him.

I don’t know how to make it any different. This is hard. Look one way and we are so very blessed. Look the other way and we are so in trouble.

I guess the way to look is straight ahead. And to look up to the Lord for guidance.

**********
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Now, as you can see, it’s been too hard for me to post every night this last week. I will slip into a routine here soon, I promise. I am more tired than I expected. The FibroCreature is punishing me for the crossing. I am also adjusting to the new morphine levels. I’m sure that is helping me sleep too.

Tomorrow, I will post pictures of the house, inside and out. (You are not the only one screaming for house pictures. Really.) It is really a nice house, you will see.

Tomorrow, I promise.