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It’s fitting that today would be Day 199. . .

Happy New Years!  I can’t believe it’s New Years Eve.  It was just New Years  . . . Ah . . . Yesterday it seems.   This year has gone by so fast.  What a weird year.  If you had told me last New Year Eve that I would be bald and living in Florida . . . I would have laughed.   Yah, right.

It just wasn’t in my plans.   Turns out I had the wrong plan.

We can make plans and we can work out every detail of the plan to the letter.  And that plan, no matter how carefully crafted, may fall by the wayside.  We shrug our shoulders and say, “What the heck happened?”

What happened was that you made your plans without God.

God is the scheduler. He makes the plans and sets the timeline.  He gives the orders.   Now, you have FREE WILL to say, “You know, I don’t think that will work out for me, but . . . Thanks for the offer, God.  I think I will run with my own plan . . . I have it all figured out, you know.   You could just go ahead and put your stamp on MY plan, and then we will ALL be happy.”

You have the FREE WILL to disregard God’s plan for you.  Just as you have the FREE WILL to believe in God in the first place.  Think about it long and hard, though.  Just as there is no such thing as a free lunch, your FREE WILL comes at a price.

See, your plan is crap.   Hahah  If you run with your plan your going to be disappointed.

Now, I am not saying that it was God’s plan that I get a rare cancer in my tush.  There is an adversary in the world that infects believers with doubts by infecting us with troubles we then blame on God.  God does, however, use Lucifer’s machinations to bless and teach us.  All things work together for good to those who love God. (Romans 8:28)

So, how do we make plans for a new year?  Pray.

What about Resolutions? New Years Resolutions.

My Number ONE New Years Resolution is to make another New Years Resolution next year.  That is a given.

I also resolve to finish the book I have half written.  I am going to finally read the Bible through in one year.  (I am going to use http://www.oneyearbibleonline.com/  Each day’s entry is a 15-minute reading consists of a passage from the Old Testament, New Testament, Psalms, and Proverbs.  Nice site.)  I am going exercise.  (Since I was far from thin when I started losing weight from the Chemo, I don’t look emancipated now.  But I have lost forty pounds in about three months.  Now I need to get some muscle back and firm up the empty skin.)

And I resolve to “Pay-it-Forward.”    I want to make a difference in someone else’s life.  We have been so blessed by so many people that I have to figure out how to repay a debt to a collection of people that spans across country.   How do you repay such a debt?   You find someone else who needs the same help and give it to them.  That is my resolution for the new year.  That is my resolution for the rest of my life.

See that’s my point.  I RESOLVE to continue to resolve.  I will continue to live my life.  I refuse to paint “Cancer Patient” on my forehead and sit and wait.   I have things to do, places to be, children to raise. And I have GOD’S PLAN to carry out.

I have faith. And my faith keeps me calm.  Some are worried that if I rely on my faith, it means that I will not do everything I can medically to rid myself of this cancer. Not.  If, on next Thursday, I am told that we need to change the direction of my treatment, then we will. If they tell me I have to have the Ifosfamide again, I will.  Even though I really, really don’t want to do it again.  If they tell me that I need to stand on my head everyday from 2:00-3:45, I will.  I will.  This is all part of my testimony.   I wish I didn’t have to do any of it.   I wish I didn’t have cancer, that my children didn’t know what radiation or chemotherapy was.

I DON’T WANT TO HAVE CANCER. But I do.

Today I have been normal.

Hey, don’t discount what I said, now.   NORMAL.   Normal is good.  Normal is fantastic!

I woke up at 9:05.   Hehehe  I kinda cheated on that when I took my morning pills at 6:30 and went back to sleep. But I was able to sleep in until nine that way, see?  I putzed around on the computer in my pajamas for a while before I got dressed.  Then I drove over to the craft store.

Hey are you listening?  I DROVE over to the craft store.  I drove.  I went BY MY SELF.

Huge.

Hadn’t done anything like it in months.

Months I say, Months.

It was fabulous.  I needed some barrel clasps for the jewelry I am making.  I went by myself and then I went to the grocery store in the same plaza to get something for dinner.  My sister, Pam and her husband, Chris are coming for dinner.  (Normal)  We’re having chicken wings.   I decided.  (See, normal)  I decided what we are having for dinner.  And I went to the store to buy it.

NORMAL!

You can’t even imagine, or maybe you can and your nodding your head. . . But to have no control over your own life.  To be totally dependant on others to drive you places — places only they have decided you can go.  I complained in my former life about having to run the house by myself.  Do the cooking, cleaning, shopping, managing the children . . .

I WANT IT ALL BACK!

I want to be normal.

*************
I have been making paper beads from the Christmas wrapping paper.  We separated the Christmas trash from the paper.  I then cut the wrapping into strips and the girls and I are rolling them into barrel beads.   Part Keeping busy and part something else.

This paper wrapped presents that were given with a different level of love and kindness than your usual pile of gifts.  Not that I didn’t love my children when I wrapped up their presents last Christmas.  But this Christmas,  other people that barely knew my children, used this paper to Bless a family having a bad year. I couldn’t just throw away the paper.   It’s beautiful paper.  And the beads we are making from the paper are beautiful not just for the colors swirled up in the rolling, but because each bead still holds a drop of the love that was showered on us this year, of all years.

I’m making beads.  So I needed to go to the craft store, by myself, to get the clasps for necklaces and bracelets.  See.  I ventured . . .

Anyway.

I was talking to my sister-in-law, Leenie on the phone when I walked back in the house from the store. I instinctively whipped off my wig like one would take off a coat or a hat. “I’m Home!” Life at home had progressed in the same old NORMAL manner while I was out driving around for the first time in months.  Dan, who has been on a cleaning kick today, had the kids all worked up too. . . They were supposed to be cleaning their room.  Rob slammed the door on Jaymi’s finger and she was screaming bloody murder . . . Rob was running in circles, chanting that he didn’t mean to do it. Brandi was yelling at him that he did it, he did it.  And there was a neighbor kid staring in the front (glass) door.  “Leenie, I better go –  life is happening around here.”   I passed the screaming girl off to her dad, gave the other girl a look, and sent the one who slammed the door on her to his room.   Then I  headed for the front door to shoo away the kid there.

“They will be out in a little while.”  I said to the startled little boy at the door.
“O o o Kay . . . “   What is wrong with that kid?   He looked like he saw his first . . .

Oh, his first bald headed woman.   I forgot that I had no hair.

HAHAHA   I forgot I had no hair.

See, today I have been normal.

Goodmorning.

Anyone there?

Since no one is out there anymore, I guess I can come on in and ramble around in here. . . And no one will notice.

Oh geez.  It’s dusty in here.  I haven’t been around in  . . . forever.  Did you know that your mind gets this dusty if you don’t show up once and a while to air things out?   It’s dusty in here.

I found out something in the middle of the night last night. . . Peanut Butter and Jelly does not taste good on rye bread.  Not in the middle of the night.  Of course, now that I know that it doesn’t taste good at 1:00 in the morning, I doubt that I will give it a shot in the light of day.  I am not sure I am sharing this to keep you from PBJ&R disappointment or to let you know that I was wandering around the house again last night.

“Where is Teresa?  Is she ok?  Please come to the screen and let us know what is going on!”

“Teresa is fine.  But she is wandering around the house in the middle of the night making bad choices with regards to the combination of bread and toppings.  This makes her tired in the middle of the day (at which time she would know that PBJ&R would not be a good combination if she were not fast asleep on the couch.)”

I know.  I KNOW.   I left you in the middle of a conversation and fell asleep for a week.  Don’t feel bad.  I did it to my family too.  I won’t go back to that conversation, if you don’t mind.  Let me just give you a quick run down of the rest of the week after Chemo and move on to what I really want to say. . . The first part of the week, my mom and sister and husband kept an eye on me all day long.  It wasn’t until the middle of the night, though, that I would run out of Thiamine and start to wander off the written path.  In the morning I would ask Dan “What happened last night?”  and he would give me that look  . . .and I would wander off to the couch to wonder what the look covered.  You see, there was white room. . .and every night I was trying to find the RIGHT white room. . .so that I could exit that reality and come through to the real day.   Now that all that stuff they pumped me with has filtered itself out of my system, I can firmly and completely know and report that I read and watch entirely too much Science Fiction.

OK.  That being said, I want to do a commercial for the supplement Vitamin B1, aka Thiamine.    If Thiamine can overcome the toxic effects of something as strong and poisonous as Ifosfamide, what can a little B1 do for your everyday junk?  Please, don’t take my word though.  Do some research and find out about this natural substance for yourself.   I also want to tell you that when my eyes started to get floaters or shooters this week, I took a B1 and they cleared up for me.  And I haven’t had anymore white room moments.

“SO where have you been then?”

Well . . . It was CHRISTMAS!   How much extra time did you have this past week?

Sorry sorry.

‘Tis the Season. . . Was it as crazy for you as normal?   We had a wonderful Christmas.  The little ones were spoiled rotten!  Many, many people made sure of that.    When people reach out to touch your children, it’s hard to know how to say enough thanks.   I did a great deal of crying over their joy.  There was my Angel and her crew who made an early delivery for Santa.  And there was a whole community that picked us up and carried us through the holiday on their shoulders.  And there was a family that added my children to their list and didn’t even know the whole story.  There was a prayer group that dug into Christmas Joy to bless us beyond belief.   It goes on and on.  I couldn’t possibly name them all.  Our Christmas was wonderful.  We learn the true meaning of Love.

I also did a great deal of crying over missing my eldest child.  That bungee cord attached to my heart is stretched about as tight as it can be.  One of these moments, I get the feeling that my nineteen year old adult/child will come smashing into my chest as the elastic connecting her to me finally wins out over geography.

“So where have you been? I called . . .”

I haven’t been talking on the phone either.   I have a great deal of people thinking that I no longer have a phone. Or maybe a hand to hold it up. Bad.   It would take every minute I have for the rest of the month and on into the next to return all the phone calls I need to make.   I have some people calling other people leaving messages like, “You don’t know me, but I understand you know Teresa. . .”

“So where’s my Christmas Card?’

I am a terrible, awful person.   But I am going to change my ways.   I have to get back on track.   I need to start writing again.  And I mean really “writing.”    This drivel that I have been putting out for the past couple months has to stop.  And it has pretty much, hasn’t it.  That is the heart of where I have been.  I have been so disappointed in the way I have been writing lately, that I just couldn’t do it anymore.   My mother says, “Just end it.  It’s ok.”  “But Mom, I can’t end it. . .  That would mean … And I’m NOT ENDING IT!”  haha   I just have to go back to writing for me.

So look for that.   But I am not promising that I will be writing everyday.   I am still a Cancer Patient.  Lol  The CHEMO stage is so much harder than the surgical stage of this story.

OK.  That being said.  What is next for me on the schedule for Moffitt?   On Jan 3rd, I go in for Lab work and a Chest CT.  This is the 3 week mark that should start a new chemo round. Instead they are running tests.  This is an important event.  We are looking for either a reduction in the spots -size or number- in my lungs or NO GROWTH at all.   If there is any growth, it means that the protocol did not work.   They do not want to keep giving me chemo that has potentially damaging side effects if it is not stopping the cancer from growing.   In that case, they will have to come up with something else. . .   If the scan shows progress, I can continue with the treatment for 4 more rounds at most.   I will never get more than 6 cycles of this Chemo.  Never.   The risk of damage to the rest of the body is too great.

This is an important test.  I am cramming for this test.  I am cramming the WORD into my heart and mind.   I am planning for a miracle.  I already put in the paperwork!

I am praying hard.

No wonder I am wandering the nights trying to find a white room serving Peanut Butter and Jelly on Rye. . .

I heard something cool this morning:  Faith laughs at impossibilities.

I am home.

I am sorry that it has taken so long to get writing.  I will try to get you caught up as quick as possible.  It will take a couple installments to tell though. So much has happened.

It was 1,000% different this time. And not just because my company was different!  Anita took me up on Wednesday. When we realized that Dan shouldn’t come to the hospital with his cold, She stayed until Friday Morning. We really had a good time taking advantage of the Arts in Medicine Department. Anita got started paining on silk!

We painted and crafted and on the second night we were even serenaded by a Lady Chanter with singing bowls.  It was an enchanting sound.  I have to admit, that I was just starting to get nauseous by that time in my cycle.  If my chanting lady had shown up an hour later, It might not have been so relaxing an experience.  (I think it’s because I studied music in college - learning how to take music apart to hear each individual sound.  When I am nauseous now, music makes it worse for me. I am probably the only one effected this way. . .)  When Anita had to return to Ft, Myers on Friday morning to open her Salon, my mother took her place.

It was great having mom with me.  My mother has a frame of reference for me, having already beaten back her own CancerMonster.  It took her two years to finish her own regimen of Breast Cancer Fighting drugs.  The first cycle she was unable to tolerate and it had to be changed.  She can relate to what I am going through. And she kept my mind off the fact that I was getting a couple units of blood to replace that which the chemo had eaten.  This took most of the day and while my hemoglobin was being replenished, I was extremely tired.  However, once the cocktail had made it’s mark, I was ready to get out of that bed!  Seeing what the added red juice had done for my energy level, Mom ordered up a couple’a bags for herself!  But no go. Sorry mom.  I wanted to work some more on my silk painting. Mom found out how relaxing it was and created her own masterpiece!

After the painting lesson, I took mom on a tour of the hospital.  I wanted her to see the Art studios (there are two) and the art hanging on the wall (there hundreds if not more.)  I am so fortunate to be at Moffett Cancer Center.  They believe here in treating the whole body.  Art, music, meditation, and medicine.   And we stopped in the Chapel as well, to say a prayer and give thanks for what we have.  We lit candles for our loved ones and for some people we had met along our tour.  I enjoyed the time with my mother there in the chapel.  My mother lit a candle on my faith a long time ago.  I will never forget being the 5th of six kids crammed in the church pew as a child.

My sister, Pam, took the next shift with me on Saturday evening.   Pam’s job in my recovery here in Florida has been that of Camp Counselor.  She loves being with my kids and they love being with her.  Aunt Pam is FUN with a capitol F. With Dan down for the count, Pam pitched in with baby sitting me instead of the kids.  In my family, we don’t leave people alone in the hospital.  The mind is either a powerful partner or painful adversary.  When you are alone, you can think yourself off into a ditch, you can.  We always keep someone around to make sure that doesn’t happen.  And we, as a family, know that the hospital staff is busy and they just aren’t aware that we are a demanding and needy folk.  We keep a body around for fetching things.  And there is one more thing that extra person does . . . Keeps the one in the bed from Escaping!  Yes, Yes, Pam was designated my last guard because she was always the fastest runner of all of us!   Pammy was sent up on Saturday night to keep me there one more bag of Mesna and tote me back home again.  We had a pajama party, Pam and I.

It was nice to sit on the cot and gossip like school girls.  I can’t remember when we last done that.  We tried to get her laptop to connect to Moffitt’s Wi-Fi system, but that didn’t happen until there was less than an hour left on my last bag of fluids.  Soon, though, the chemo cart was beeping down to 0 and it was time to call a end to the second cycle of Killer Chemo.

“Hurry Pam!  Get a wheel chair!”  The chair wasn’t for me though.  It was to cart down all my things.  I made it.

Two down.

I made it all the way through without loosing my mind.  The difference in the dosage and the addition of the Thiamine made this round of Chemo do-able.  If you remember, the addition was to be Methylene Blue.  The medical team had a conference on the use of the Methylene Blue verses Thiamine- better known as Vitamin B1.  Evidently, “The Blue Stuff” has some side effects of it’s own.  One being the ability to turn the user totally blue like a smurf!  Methylene Blue acts as a sponge soaking up toxins, but it leaves of a trail of blue dye where ever it goes.  The Thiamine, on the other hand, is a natural substance that the body makes. Vitamin B1.  No additives.  No dyes of any color.  And it worked.  I had a 15 minute Thiamine drip every so many hours.  I could tell when it was needed.  As my skin started to get itchy or my eyes started to flash, a new bag of Thiamine would show up and I would soon be fine.  I made it through this week of Ifosfamide because of the (non-bluing) Thiamine.  I had to wonder why everyone isn’t automatically given the Thiamine when faced with Ifosfamide.  They already bundle Mesna in there to protect the bladder. Why not protect the mind as well.  It is the mind, after all, that must make the decision to accept the protocol.

Then Sunday Pam drove me home. And the Thiamine that had been dripped into my veins in the hospital wore off.  About an hour or so after I got home (it takes 2 ½ hours to get home- time wise that computes . . .), I started to get weird.  Haha  OK, weirder than usual.  I pulled away from my kids and husband and headed to the bedroom.   I’m not sure what happened that night, but by eight o’clock or so, I was out of it.  There was something about a flower that I walked through. I can see it still.  But I still can’t explain it. The flower took away my senses.  I tried to explain what was happening to Dan, but I could see by the look on his face that I wasn’t making any sense. So I went to bed.  I remember I woke up at 11:00 and Dan gave me my medicine.  I still couldn’t talk to him.

Monday morning, Dan woke me at 7:40 with my medicine for the morning laid out.  I usually get Brandi up for school at 7:20.  I was upset that I slept late.

“Are you OK?”
“Ya, I think I am.”
“Do you remember last night?”
“Ya, I think I do.  I couldn’t explain then though.”
“You couldn’t talk at all.  You had me worried.”
“Ya, me too.  But I’m alright now. You go get the kids up.  I’ll take my medicine.  I’m alright.”
“Look I can stay with you . . .”
“No, don’t be silly, I’m all right this morning.”

But I wasn’t quite right.  I wanted Dan to go on to work without worrying about me.  I knew that I could get someone else to come over if I needed them.  So I cowboy-ed up and got the kids ready for school.  I pushed the four of them out of the house as quick as possible.  Then I called Anita.

“I think I need some thiamine.  I kinda flipped out last night.”  And I told her all about tip-toeing through the tulips until I was speaking another language that I didn’t even recognize myself.  I told her I was feeling pretty weird still, but at least she could understand me.  She said to hold on, she would find a health-food store and bring me the Thiamine as soon as possible. I hadn’t realized it the last night, but once the hospital dripped thiamine was gone from my system, I started to have the side effects that the vitamin supplement was keeping at bay.  Why would they not send home some extra hero juice to hold me over until the IFO totally seeped away?

I laid down on the couch and fell asleep.  The next thing I knew a car was pulling in the driveway. I didn’t see who it was and I wasn’t dressed for company.  The closest thing I had to hair was my CancerMonster Ball cap sitting on the coffee table.  I snatched it over my bald head and answered the door.  It was my mother.

“Are you ok?”

Nita.  She sent in re-enforcements.

“I’m OK, mom.  Nita sent you?”
“I had to see for myself. She had to wait on a phone call and didn’t want you to be here alone. And I brought my mop and sweeper. I’m going to clean your house.  I’ll stay with you until Dan gets home.”

I called Dan.  “Mom’s here.  She said she came to clean the house.  She is going to stay all day.”
“I cleaned the house yesterday!  Did you call her to come stay with you?  You didn’t want me to worry did you?”
“I didn’t call her.  Anita did though.  Lol.  Anita is going to pick up some Thiamine.  I didn’t want you to worry.”
“I was worried.  I’m glad your mom is there.”

Me too.

I slept on the couch much of the morning while mom fluttered around me trying to find something Dan forgot to clean. I heard her answer the phone near lunch time.  “She’s asleep. She just got home from her second round of Chemo last night. No, we’ll both be here. We are looking forward to meeting you in person.”

“Who was that, mom?”
That.  Was an Angel.”

One of my Christmas Angels.  No, I imagine she is an a full time Angel. But this one has wrapped her heart around my family during what could have been the toughest Yule Tide Season of our lives.  Remember the ladies that brought over the Christmas tree and the decorations to adorn it?  They work with “Angel.”   “Angel” was coming over to bring the children Christmas Clothes - early to make sure they fit right.

My Lord, what a blessing.

As I am trying to hang on to Reality, the reality is that people care.  People are good.  And nothing is left to chance.  MY “Angel” owned a bedroom set that Anita happened to buy from her to hold the softest mattress ever made.  A mattress soft enough to comfort her little sister who was fighting for her life.  Little did she know, the bedroom set she bought came with a Christmas Angel.

And hopefully a life long friend.
This brings you up to just Monday afternoon.  I have more to tell you about my week.  Let’s call this “Part One”  and I will continue writing for tomorrow.   Dan is coming home to get us.  We need to get to the store.  It is Christmas time, after all.

I am ok.  I love each of you. So much is happening in our lives that the story is taking longer to tell than normal.  And I know that my writing is not up to snuff.  It’s hard to write when your asleep.  Stay with me through this mind altering stage, please. This too will pass. The story is far from over.

Know this:  My God is Bigger than CHEMO.

Even Sarcoma Chemo.  How’bout’dat?

A quick note for all of you that called or emailed your concern about Teresa. She’s fine, the chemo went much better than before. She has been home since Sunday and has written posts but keeps falling asleep before she can post them. She said she will update it all and post tomorrow.

Daniel

Hey It’s ME!

It really is me too. I am here at Moffitt and still myself. Anita and I came up yesterday morning so that we would be close when they called to say a bed was ready. That was hopeful thinking on our part. This place is booked solid with patients. We didn’t have a room when we first made it to town so we went to JoAnn’s Fabric looking for silk so we could paint it like we did in the Arts in Medicine studio the last time we were here. Then we called again and there still wasn’t a room so we went to an Art Supply store called Pearl where we found the supplies to paint on silk and some silk to paint on to boot. We were so excited to paint in my room! Another call and we stopped off at a discount dress store . . . By that time I was so tired of driving around and shopping even though the company was fab. I called the admissions office one more time.

“Maybe tonight. Why don’t you call back around 4:30. We should know more then.”
“Tonight!?” You have to be kidding me! We drove up this morning from Ft. Myers. We have been driving around all day. We are so tired.”
“Yah, I’m sorry. We are so booked. We have to wait for a bed to open . . .”
“Is there anyone else before me?”
“No, your the next on the list. . .”
“Well, Ok then. I guess. I will call later then. Love ya. OH wait. I didn’t . . .” then there was laughter coming from the phone and from Anita who was listening to me tell the admissions lady that I loved her!” “I’m just so tired! I meant that I would love you if you could find a bed for me to sleep in!”
“Well because you love me . . . hehehe . . .we will find you a bed, but it will be later not now.”
“Oooooo-kay I will call back later.”

I couldn’t believe it. Tonight. TONIGHT! As it turns out, the hospital is packed! Christmas coming. Better get your poison before the Yule Tide. By this time, I could barely stand up any more. I went to the front of the store and snagged a wheel chair. (I am getting pretty good at wheeling myself around ever since I got my own wheel chair. I think I forgot to tell you that.)

By the time we had some fast food for dinner it was 7:00p and we were really tired of hanging out in Tampa. I called the administration office one more time. If they weren’t going to get us a room tonight I just wanted to know. We could go to the motorhome and get in our pajamas and be done with this day. We could wait for our room there in the morning. Just say the word and we’re “home.”

“Why don’t you come on over now. Because of what you said earlier (Hehehe ) we found you a bed!” She wasn’t even the same lady I said I loved!
“We’re on our way.”

Long story shorter, it was 8:00p when we got to that room. It used to be a broom closet, but it had a bed. For me at least. There was no cot, nor room for a cot for Anita. Poor sissypoo had to sleep in a recliner. BUT WE HAD A ROOM!

It took a while to get everyone on the floor up to speed with my case and run down all the meds needed to get me started. Chemo officially started at midnight! Midnight, can you believe it? A fine end to a day that was pretty fun except for the tiring part.

Today went pretty well, too. In the morning, Anita set me up with the silk paints and I lost myself in a circle of abstract silk design. I found a new hobby! This is so relaxing and meditative. All that was missing was the tinkling background music and the Art Therapist who showed us how to do it. In the afternoon, we went and found just that! We went to the open studio time with the tinkling music and the Therapist and a couple new projects. Anita decorated a page in a communal book with collaged papers and inspirational words. It turned out so pretty! I made paper beads into a bracelet! I started with triangular paper pieces cut from colorful, l recycled art work other patients made. On the blank back side of each I wrote secret messages to myself before rolling them up and gluing them into beads and stringing them into the bracelet. I loved it. And only I know what the messages are!

After getting back to my small room, I reminded my nurse tech that we were looking for a cot. She found us a cot, all right. And Anita found a bigger room to put it in! She just happened to notice a vacated room down the hall and snagged it before they put someone else in it. We had a lot to move. Well, actually . . . I moved myself and my IV Pump to the new room and Anita moved the rest. I love her so much! Much nicer room. No more broom closet.

Unfortunatly, Dan won’t be able to share the room with me for the rest of my stay as planned. He has a cold and can’t take the chance of coming up here. Not only for my sake but for the rest of the patients on the floor as well. Anita is staying with me again tonight. My mom is coming up tomorrow morning and staying over Friday night. Pam will come up on Saturday and take me home Sunday afternoon. I will miss Danny by my side, but a cold in the wrong nose could be deadly.

It’s now just after 8:00p and I am starting to feel the effects of the Ifo. I am nauseous and antsy. I am praying and reading the signs I have taped to the wall: “This too will pass.” “My God is bigger than this!” “Nothing is impossible for God!” “This is part of your Testimony.”

And this is all part of my Testimony. I will tell this part along with the part where no one was willing to give me treatment. And here I am at H. Lee Moffitt Cancer Center. It’s a fantastic place.

I may not write again before I go home. Please keep me in your prayer and I will keep you in mine.

Love
teresa

We went to church this morning even though the devil tried to keep me from getting there. I woke up in a foul mood.  And I had nothing to wear to church.  This church is “dressy casual” and I have nothing that matches that description.  Remember before coming to Florida we lived in a motorhome in a campground for six months.  I left all the “dressy casual” clothes behind packed away in the storage unit back in Oregon.  There wasn’t much room per capita for excess clothes.  Most of what I do have is too warm for Florida.  The rest is too big now that I have started the Chemo Diet.  I ended up putting on a pair of jeans and a fancy shirt that is really part of a pajama set Anita bought me for the hospital!

I figure God didn’t care what I had on. And if someone in the church figured out I was wearing a pajama top, oh well. No one called me on it, at any rate.  hahahahah

Once you get to church, all that fussing fades away.

I have been on edge for the last few days.  Chemo starts again soon and I was already freaking out over the thought of it.  I just barely recovered from the first one and I have to start over again.

I have been making a list of ways that I am going to do this one differently, but still I have been worrying this into a huge knot in my stomach.   During this morning’s worship I asked the Lord for help.  Help with the anxiety of going back in the hospital and with the time I am in there.

I got a few things from the conversation.   One, the chemo is part of my testimony.  I have to accept that I have to go through it.  It’s part of the story.  But I will not be alone.  I just have to remember that it will pass and the side effects will fade.  I am going to make signs to hang in my hospital room so that I will not forget when the worse hits me.  “This too will pass.”  “My God is bigger than this!”  “Nothing is IMPOSSIBLE for GOD!”  When my mind starts to wander I will have directions back to the right path.

And God gave me something else today.  I saw a clean bone scan.  I felt a clean body with no cancer.  It was not today’s picture.  It was the picture at the end of the chemo.  Three weeks ago, the doctor in charge of the chemo floor, DR. B,  told me something an unbeliever might find daunting. “Your cancer is treatable, not curable. If the cancer goes away and never comes back, it won’t be because of anything we [doctors] did.  It will be a MIRACLE.”

I am betting on the miracle and praying for the Doctors.

Along with the reminders on the walls, I am going to take control of the food that is brought in the room.  I don’t want anything cooked, no matter how appetizing it might or might not look.  The smell of it is what makes me sick first. (The taste second. Lol)  I made a list of the things I was able to eat after I got out of the hospital last time. I am hoping I will be able to eat them while I am in the hospital too.  Raw vegetables like grape tomatoes and cucumbers, wheat flaky cereals, cheese, Jell-O, fruits like peaches and grapes.  I had a hard time with water even, but spring water was better than purified water.  No caffeine - that means coffee or cola. I have been having hot decaf tea in the mornings. (No wonder I am so tired!)  Ginger ale or diet un-colas. Sweet tastes didn’t go down well, but Clamato juice and V8 Fusion tasted good.  I don’t know if any of this will work, but it’s worth a try.  If you don’t eat for three or four days your bound to see things that aren’t there, whether or not your on chemo.

I’m not going to try to read - I still have flashes through my eyes from the last time.  And I am not going to beat myself up if I can‘t write.  I will have my computer with me. If I can write great.  But I worried about not being able to last time.  I’ll try to get you an update or two through Dan.  This time I will expect not to read or write while the chemo is dripping and there will be much less stress.  Less stress is good.

I plan to be sitting in the chair in the daytime more than lying in the bed. And I want to try to get to the open art studio once.  I want to walk around more this time.  I want I want.

Mostly, I want to try to stay firmly in reality.  And if I can’t, I want to remember that there is a way back.  And throughout the four days I want to pray.

This change in my attitude and the change in my medicines will change the results.  I have to believe this.  It can’t be like last time.

I have to do what ever I have to do.

Even though what I want to do is to go back to the beginning of the summer.  Go back to the park on the Siletz River and kick my feet in the water.  I miss Clyde. I miss campfires and S’Mores.  I want it all to go away.  I want a do-over.  I want to move slightly to the right or left and miss the fluke that planted itself in my tush.

I want a different tomorrow.

But since that won’t be happening I will have to march forward with my head up and deal with each today as it is.

And I have to do what ever I have to do.

Have you ever been so tired that you fall asleep in mid sentence?  I just did that to my kids.

The three of them came running into my bedroom where I have been lying on my bed watching TV one moment and sleeping the next.  There had been some major “to-do” between the boy and at least one of the girls.  The oldest girl made it to the room first.  “Robbie punched Jaymi in the stomach hard like this.”  Evidently she is just a witness.

“I DIDN’T I DIDN’T TOUCH HER I DIDN’T MEAN TO”

I couldn’t even hear the boy. He was screaming so loud.  “Robert, go to your room and shut the door.”  I have no idea who did what, but I wasn’t going to listen to that anymore.

Then the middle one calmly states that she may have hit the boy slightly but he kicked her first and his kick was much harder than the hit.  (I am sure the older one said the boy punched the girl in the stomach . . .)

. . .

. . .

. . .

“Mom.  MOM?”

“What?”
“You fell asleep.”
“I did?”
“Yah, we were waiting here to see what you where going to say.  And then you were asleep.”
“Well . . . Why are you bothering me with this then?”

They ran off.  I really only sleep for a few seconds at a time. And then I wake up and continue what I was doing.

I think this might be why I can’t drive. Haha hahah

If you have been wondering where I have been the past few days, now you know.  I was asleep.

Except for yesterday. Anita drove me up to the Moffitt yesterday.  I had to have lab work done and then see Dr.W.  It was “Make the Plan for the Next Chemo” day.

I had my blood work done first.  It didn’t take long.  We had some time between appointments and stopped off at the Arts in Medicine studio.  It was the first time that I saw someone in there and I just wanted to see what going on.  There were a couple other patients and a couple Art Therapists.  They were painting on silk.

“It is a community project.  Would you like to add your mark?”

Anita and I are both artsy-craftsy.  We were drawn in by the colors blending across the fabric.  The silk was stretched over a hoop and special dyes and paints are used that bleed into the fabric.  Colors blend together.  It’s beautiful.   And the whole program is fantastic.  There was soft Asian music playing in the background.  Moffitt Cancer Center treats the whole person not just the tumors.  It is truly a fantastic place.

We picked up a brush and added our “inner feelings” to the project.  I found out that while I am in the hospital, I can join another open studio or even have an art therapist come to my room.  Huhh.  How about that?

I would have rather stay there for hours.  But I still had to get “The Plan” from Dr W.  When I did get the plan it didn’t surprise me.  Same drugs, only 50% on the Ifosfamide and add in the “blue juice” for sanity.  This is what he proposed last time I saw him.

I have had less pain this week.  Dr W seemed to be encourage by that.  There is nothing to do for being tired.  That is par for the course. I lost my hair.  That is normal.   I have my appetite back.  Normal again.  Nothing is stopping me from getting back on the bag.

The chemo bag.
Great.
great.

I have a new plan of my own.  I have been making a list of things I am going to do different next time.   I’ll share that with you tomorrow. (If I’m awake. lol) Chemo starts on Wednesday, December 12th.   They will call me when a bed is available.

I have five more days and then I start over.  This time will be different.

Dear Lord, make this one different.

Tired again.  I’ll get back to you soon.

Love to you and yours,
teresa

HAIR LOG: Chemo minus two weeks

A couple days ago on Sunday, I told the kids that I thought maybe, my hair was loose.

“Loose?  How do you know?”  Brandi was the first to bite.
“Well, you know when a tooth is loose long before I believe you, right?”
“Ya. I suppose.   And you think your hair is loose?”
“Ya.  I think so.  How much will the hair fairy give me per strand, do you think?”
“IF THERE WAS A HAIR FAIRY,” Jaymi gave me a look beyond her eight years, “I doubt you’d get paid per strand, mom.”  We were now crossing over into money, which is Jaymi’s forte.
“OK, then how much per handful, Jaymi?”
“Hmmmm.  I don’t know.”
“A dollar a handful sounds fair.”
“No.   I think maybe a dollar for the whole head.”
“What?  Only one dollar for ALL my hair?  That’s not nice.”
“No, but it’s business.  And business is not always nice.”

Not only is Jaymi my fiscally responsible child, she is also the one with the best sense of humor.  I wasn’t sure which part of her was egging me on there.

Now, last night after dinner, it started.  I was already in my pajamas and getting comfortable on my bed with my laptop and the TV button. I forgot to make myself something to drink.  I started across the bedroom heading to the kitchen.  Without thinking about it, I ran my hand through my hair and I knew immediately that it had started.  I froze for a moment and then I pulled my hand away from my head. And it came away with a nice collection.  I stood there looking at the hair in my hand.

I knew it was going to happen.  I knew my hair was “loose.”   I said over and over in the last hundred and seventy two days that I didn’t care about my hair.  I made jokes about blond wigs and curly new hair.  But here it was.   It’s falling out.  It’s in my hand.   How do I really feel?

Ah . . . Weird.  Like a slow motion fender bender is taking place before me.  You see a fender bender about to happen and you think, “dern, that’s gonna smart.”  You don’t scream and rant and freak out.  No one is getting hurt.  It’s just a fender bender.  Haha poor sap’s gonna have to file a claim . . .

I went to Dan with my handful of hair.  He was on the phone discussing a washer and dryer.  That was more important at the moment.  We really need a washer and dryer and it was only my hair falling out.  I walked away.

In the bathroom, I deposited my treasure on the counter and took a good long look.  Ya, it was loose.  I could see “looseness.”  It was coming out.  I reached up and tugged.  OHHH  How’bout that.  Tugging produces a- ah . . . a better collection.  No more tugging.  One more tug.  Now, no more tugs.  Just one.  Ohhh   don’t do that again.

It’s falling and I can’t make it stop.  Well, stop tugging at it, silly.

I went back to the porch where Dan was still on the phone.  It could wait.   It’s just hair.  I walked into Robbie’s (Oh, wait I’m not supposed  to call him Robbie anymore) Robert’s room where the three kids were playing together.  (Awe aren’t they sweet, playing there together without knocking each other over the head)

“Well, the hair thing has started, guys.”
“Really? Le’me’see!”  Jaymi was very excited.  I gave a quick tug and showed the results to the crowd.
“Wooow!  It’s really falling out! Do it again!”    ppfft  I guess I prepared Jaymi better than myself!

Brandi patted me on the shoulder and backed away.   Robert went back to the game.  Jaymi followed me back to my room.

“Just pull it all out.  Just do it now.  I’ll help you!”

She was way too happy!  I looked down at my baby girl and wondered why she was so anxious to help me pull my hair out.   This is the child that everyone tells me is so sweet and kind and quiet.  “Such a nice girl, that Jaymi is.”  YA-aa   Sweet, my new tookus!   She wants to pull out my hair!

“Let’s just pull it, mom, it’s all going to fall out anyway and if you don’t pull it out it will just fall out in your bed.  And Dad just washed the sheets, mom. Just shake it like this and see what happens.”
“Some of it is not ready to let go yet, James.  Let’s just let it fall out on its own for a while.  Tomorrow I’ll probably have to help it along more.”
“Oh, man. I‘ll be at school.”
“Girlfriend, your scaring me.  Go get ready for bed.”
“It’s only 8:00.”

Lord help me with that one.

Dan finally ended his call and I told him about the hair falling out.  He too, wanted a demonstration. “Oh.  How do you feel?”

“Weird.”

I called Anita.  “You have some wigs over there?”
“Oh Honey.”

Ya.  It started.

This morning I woke without moving and inch.  I wondered if it was laying there on my pillow.  Not all of it.  I could feel some loosely attached.  I could see some sticking in my face.  It was only 6:30a. I didn’t need to get up just yet.  It would be a good idea, though, to have some private time to check the hair situation.   Maybe try to figure out how to wear the scarf I picked up this past weekend before the kids got up.   (I watch Desperate Housewives.  Lynnette always wears a scarf.)

I sat up and felt the pillow.  Humph.  There wasn’t a pile of hair, like I expected. It hadn’t just jumped ship in the night.   But a tug proved that I hadn’t imagined it.

It’s now 10:20a and its is coming out so easily that I am not sure what’s holding it there anyway. Static electricity is the best guess I have. Every once and a while, I pull a lock out and put it in the dish I have in the bathroom.  I don’t know why I am holding it all there.  I guess I want to see how much there was when it’s over.  Weird.

Here is my dilemma of the moment:  I need a shower.   Hahah    If I take a shower now, it will be gone when I come out, I just know it.  Hahah  One part of me says, “Go ahead and get it over with.”  The other is still sitting here on the couch.   Scaredy-cat.  That other part of me thinks a nap would be the best course of action. Cats like to nap, you see.

I’ll let you know . . .

************
2:20p

Well.  It is done.  Pretty much anyway.

Hahah

As I was contemplating whether to take the nap or take the shower, I fell asleep.   Problem solved.

I woke with a start and a crick in my neck.  Being tired has become my normal state.  All those years with the FibroCreature prepared me for the fatigue of cancer.   I can fall asleep like a pro.

Once I had my lunch (and my nap) there was only one thing to do.  Take the shower.   Come on, girlfriend.  You can do it.   Be a woman.  Cowboy up.

Taking a shower would mean most likely getting most of the hair to fall out quickly.  As scary as it sounds, I felt that it would be easier on everyone if I just got it over with.  I started the water.

It’s just hair.   What is it about the woman’s psyche that ties our value to the fur on our heads.

I took a picture.  I held the camera in front of the mirror and smiled.  Then I stepped into the shower.   It felt freeing.  Take the bull by the horns, you know.

My hair reacted the way I thought it would.  In handfuls.   It was like the magic hanky trick.  The hair kept coming and coming.  Hand over fist. With each tug my head got lighter and the water penetrated deeper.  Deeper into my scalp and deeper into my mind.  It was OK.  This deflocking was OK.  It was something I no longer had to wait for.  No longer had to be afraid of.

I wondered what would run out first: the hot water or the hair.

“Father, could you hold up the hot water for me?”  The temperature never faded.

The pile of hair grew.  I couldn’t see myself.  I could see the hair on the floor and I could feel what was left on my head, but I couldn’t see what I looked like as the two met.

Here was my hair falling out.  My head growing bald and I was thinking that this was more normal than I have been feeling for awhile now.  I don’t’ know how long the shower went on, but soon I could tell that the last of the hair on my head hadn’t let go yet and would be there when I turned the water off.  Turn the water off now.   I didn’t turn the water off.   What would I look like.  It was well and good to stand here in the shower and feel free.  What would I feel standing there in front of the mirror on the wall?  “Who’s the fairest of them all?”  Then the phone rang.  I stepped out of the shower facing the opposite direction from the mirror.   Chicken.  The caller ID said it was Anita.

“Hello.   Hello?”  It was Anita’s phone, but it wasn’t Anita. (Her phone has a habit of calling people on its own.)  Hahah  Was it a coincidence that Anita’s phone called me at the moment I was trying to get the courage needed to step out of the shower and look at my bald self?

I really don’t believe in coincidence.   I believe in nudges from the Lord.

I stood there in front of the mirror.  Was it still me?   Not exactly.  It was me.  But it was a bigger me.  A new and improved me.  A wispy headed bald woman kind of me.  Someone who had one more experience under her belt.  One more notch on her bed post.  I took another picture.

I lost my hair and survived.

I got dressed and put on make up.  I found some purple lip gloss to match my tie dyed t-shirt.  I picked out some small studded ear rings and tied on the scarf.  One more picture.

I remembered the woman who went before me in radiation. Her make up was perfect and her ear rings just right.  She had no hair and the most exquisite smile.  She was the most beautiful woman I have ever seen.

No. You don’t get the pictures.

This kids will be home soon.  What will they think?

I’ll let ya know.

**********
“Wow. It really fell out.”
“Yah, it really did.  Is it ok, Brand?”
“Mom, you have cancer.  Of course it’s ok.”
“It will grow back.”
“It will grow back.”

“Doesn’t make any difference to me.”  My husband held me and smiled.
“That’s good. I love you too.”

**********
By the way, Anita is coming over with wigs!

A girl can only be so strong.

Day 169- Saturday, December 1st, 2007

December 1^st.   How did that happen?

It was just June and I was just finding out that the bump on my butt wasn’t a splinter gone wild as I was lead to believe. June, July, August and I was finally getting radiation for the rare fluke of a sarcoma. September, October 8^th and IT was both gone and there again. Spread. October, November and my family is racing cross country on a wing and a prayer. Chemo. Weight loss. Brain Games.

Too fast.

 Today, we put up a beautiful Christmas tree. Santa’s elves delivered this tree yesterday, complete with all the decorations needed to make it sparkle. I was too tired to stay awake last night, so the family waited until this afternoon to put it together. This tree is special, because it was given with love to a family who needed some sparkle in their lives.

This tree looks so pretty all lit up! I couldn’t get a picture that would show just how beautiful it really is.

There are families like ours everywhere, by the way. Only these families may not be spelling their problems out on the internet. There are families who’s Christmas will not be the same this year for some reason. For any reason. There are hidden families with hidden children not on anyone’s list. From the outside, these families look average, middle class, who knows, they may even look like they have it all wrapped up.

Some wonderful people found out about us and brought us the most beautiful tree and trimmings. Poke around your town and find a hidden family.

********

This evening the five of us watched a Christmas movie on Hallmark. I don’t remember when we all sat together to watch a show. Brandi kept telling us how much she liked being together. How much she liked the lights on the tree. “Now we need a pine flavored candle!”

Just a “Pine flavored candle” and everything will be all right.

*********

Day 170- Sunday, December 02, 2007

This morning we visited a church down the street. “Auditioned a church” might be more like what we did this morning. At least that is what we told ourselves we were doing.

God sent us to this church down the street.

Ya, that’s more like it.

Have you ever been “sent to a church”? This happened only once before for us. We had recently moved to Cody, Wyoming and had been checking out the churches in town, looking for the right one. The clerk at Walmart casually asked, “Have you found the church yet?”

“Huh?” I jumped. The clerk was a young lady, but she was speaking for the Lord.

“The Church. You are looking for a church right?”

“Yes, we are.”

“Our church is fantastic. We have an awesome worship team. Music is very important in our church. Sunday service is at 10:00. We sing until eleven or eleven thirty . . . whenever.” She gave us directions and we were on our way. We walked out of Walmart in a daze. When you get directions from God via a grocery store clerk, you have to pay attention. We went to that church the very next Sunday. And stayed until we learned what God wanted to teach us.

Walking into this church this morning was a little different. It’s down street. We saw it ourselves. An Assembly of God Church. Smallish. Dan stopped in a few days ago and spoke with a few members. We didn’t know that we had been “set up” for this very church on this very day.

Walking in, I had never felt so self conscious. I wore a mask. So many new people, Dan and I felt I needed to be careful. I promised Dan that I would wear the mask and not shake anyone’s hand. And I carried the hand sanitizer in my purse. I kept one hand on Dan’s arm and the other on my cane. Still, it was hard not to shake hands. People who were clearly set to shaking hands with new people had a hard time as well.

 

What do you do when coming across someone wearing a mask? Do you ignore their precautions and touch them anyway or do you ignore them all together? Or do you greet them as you would anyone else –just without a hand shake? Now that I have been the person in the mask, I will never again stumble over what to do.

The children went to Kid’s Church and Dan and I settled in near the back of the sanctuary. The music started and church filled with the spirit of God. It was as if a ship set loose from the dock and its sails filled with a warm wind. The ship set a course for salvation. This was no dead church. The Lord said to make a joyful noise. And it was made.

Rock on.

If you have never been to a Charismatic Pentecostal Church . . . do what you can to check one out.

Then came the alter call for prayer. Mask or no mask, I was going up there. Dan held my arm and we went forward. The Pastor saw us coming and motioned us to him.

“I know that you are recovering from Chemo, but could I anoint you.”

“Please. Absolutely.”

And he began to pray. He called others to lay hands on Dan who was holding me. And he prayed. He called for the Lord to strike the cancer cells and he prayed for a miracle. He told me that I was not done with my life. I had a testimony. I had more work to do.

I have been prayed over many times in the past seven years. Today I felt the Lord embrace me. I pulled off the mask and I wrapped my arms around the Pastor. I won’t need to wear a mask in that church again. God wouldn’t send me to a church where I was not protected.

I know that will be hard for some people who love me to understand. For their benefit, I won’t volunteer for the kissing booth at the church bazaar. How’bout’dat? But I won’t hide my face in that church again. When the Lord looks down on that church, I want him to see my face looking back up to him. Lol

The Pastor’s sermon was about Christmas and what it is and isn’t about. It’s not about the tree, the shopping, the parties or the presents. It’s not about you. It’s about others. And it’s about Christ.

Hmmmm. Go figure.

It was around one when we got back home. All that singing and dancing and praying tired me out. While Dan took the clothes to the laundro-mat, I had a long nap.

Prayer. Prayer is going to get us through this. The Chemo will work better and be less toxic with prayer. Please keep praying. I have way too much to do.

I have a slow schedule this week. Just Thursday. Labs at 2:30 and Dr.W at 3:30 to set the plans for the next round of Chemo that will most likely start December 10^th or 11^th. This will be the first “normal” week since we arrived here in Florida. The kids in school everyday and Dan at work.

And me here at home. Hmmm how’bout’dat?

Oh and by the way:

Please pray this week for my blood counts to come up so I can stay awake! What’s the use of being home alone if you’re asleep the whole time!

Gotta Love Me! It’s a rule!