Well, having Amy and Joel here was an absolute blast.  They were only here for one full day, so we packed that day full: Garden of the Gods, Old Colorado City, Michael Garman Galleries and Magic Town, Whole Foods (Amy doesn't have one of those), The Melting Pot, Swimming at the hotel, Trying on wigs.

We really did have fun.  Here's a link to Amy's photos.  And here's a sample.  First off, me as a blond!  One of my cousins talked her SIL into loaning me this wig.  It's beautiful, but since I haven't been a blond since I was 4, I'm not sure it's "me."

Joel, Amy & Me at The Melting Pot for my early birthday dinner:

And Joel, Amy, & Me at the Garden of the Gods Visitor Center:

Being from Savannah, TN, Amy and Joel had never seen snow in May before.  And it flurried a bit on Saturday, so they got to take pictures of them standing in the snow, making snowballs, etc.  But they left yesterday morning.  About 4:30 yesterday afternoon, the drizzly rain we had been having turned to snow.  And this morning, we woke up to 12" of the white stuff.  They would have been blown away had they stayed just 24 more hours.

Because of the snow, we had a 2 hour delay for school, so I came into work late as well.

Michael and I talked today about working from home and what was acceptable without looking like I was taking advantage.  There are days that the act of GETTING to work wears me out far more than working does.  Those days, I'd love to just call in and say, "I'm working from home," but I've been hesitant to do that more than one day a week.  Michael today told me that he would be happy if I could just shoot for 2 days a week IN the office.  What a relief.  Seriously.  If I can just turn on the computer and start working at 7:30 when everyone leaves the house, I can get 8 hours in without trouble.  But getting out of bed at 6:30 to shower, put on makeup, and get dressed can take some major energy.  Fortunately, I don't have to do my hair anymore, but that only cuts off about 10 minutes!

Wednesday this week, I will be having an infusaport inserted into my chest.  It's an outpatient procedure, but I'll be away from work all day.  They're giving me Versed, but not knocking me out.  Versed makes me extremely drunk extremely fast.  So I could be a hoot on Wednesday.  Y'all pray for my mom!!!

Thursday, I go see Dr. H.  We have to discuss my pain again.  The patch isn't holding like it should.  Which makes me mad and sad both.  I'm going to work from home that day so that I can get a full day in before my doctor's appointment.  It's easy to "go to work" at 6:30 when it's in your bed!

Thursday night, Paul graduates!!

Friday is chemo day.  My Daddy is coming down to take me and hang with me for the 6 hours of chemo.  The chemo room is always cold, so I'm going to wear one of my fuzzy hats to keep my bald head warm.  Saturday night, I had been wearing a wig most of the day, and then I put on my turban.  By 10:00 as we were getting home, I was tired of things being on my head.  So I pulled off the turban and just went bald for a few minutes.  But when I walked from the truck to the house, my poor bald head got COLD!!!!

Back in the fall, when we thought chemo was going to take my hair, my friend, Megan, sent me a wonderfully fuzzy hat that is sooooo soft. I pulled that out of my hat box and pulled it on my head.  It is the most wonderful thing on my head that you could ever imagine (short of my own hair, of course).  It's soft.  It's warm.  I've slept in it 2 nights, and it's what I put on when I get home and take off my wig or turban now.

Paul's parents are arriving tonight for his graduation.  They're planning on leaving on Sunday, and since that's day 2 post-chemo, and my hardest day, my mom is going to come down on Sunday to "babysit."  But since I'm having an extra procedure this week, it will be nice to have MIL around to help keep the household running.

OK, I'm outta here. Y'all have a wonderful Monday night, and I'll see you in a day or two!

Well, eating yesterday turned out to not be the best idea after all.  I woke up nauseous this morning, and hurting.  I called in sick to work, 'cause I was just too tired to do anything.  And I slept all day.  Well, nearly...

This afternoon, one of my best Tennessee buddies flew out to see me.  Amy and I have known each other for nearly 10 years.  We met at Moms Online before its demise.  And we've emailed nearly every day since then.  She came out in November before my surgery and helped Kim, Laura, Kath, & Tracy cook up a storm and put things in our freezer.

I was SOOO happy to see her.  But then 5 minutes later, she brought me a surprise.  LOOK!!!

It's my "brother," Joel!  I can't believe they're both here!!  Currently, they're in the kitchen making dinner.  Unbelievable! 

The first time Amy and I met IRL, Joel and I hit it off majorly.  We have so much in common.  And since his family is rather crappy, I adopted him into mine.  He is funny and silly and just very fun to have around.

Amy came in with Tracy bringing her.  I was so glad to see her and cried 'cause I needed her after the week I've had.  About 5 minutes later, the dogs went nuts again, and Meleia looked out the window and grinned.  I asked her what they were barking at, and she said, "a car or something."  And then someone walked in the door.  AND IT WAS JOEL!!!  I cried some more.  It is just amazing to have both of them here.

OK, time to eat an Amy cooked meal!!!

EDIT AT BOTTOM:

The journey from Point A to Point B was traumatic.  I had hair, and then I didn't.  In small scraggly looking steps.

Last night we accelerated the trip.  Paul shaved off the 20% that was left.  And now I'm at Point B.  Point B isn't all that bad.  Not my first choice of hair-dos, but not all that bad.  Because there's a little bit of fuzz left where Paul clippered, I'm wearing my new turban today instead of the wig.  And I've gotten a lot of compliments on it.

Ciera reminded me this morning about the Amazing Race where Joyce (of Uchenna and Joyce) had to shave her head for a fast forward.  And how beautiful she was after she lost all that hair.  According to her, the hair loss has done the same thing for me.  Before she got out of the truck this morning at school, she took a closeup of me with her cell phone.  What's she going to do with THAT??

It was rather strange as Paul was sweeping up what was left of my hair off the floor to see that there was less down there than I would usually have after a haircut.  So a whole heckuva lot fell out yesterday when I couldn't see myself.

Paul graduates with his MEd. a week from today!  His thesis is turned in, his project is being printed, and his hood and cap and gown are here.  I won't have chemo next Thursday, 'cause I don't want to be draggy on Graduation night.  He's getting a new digicam for his gift.  I was amazed at how much less they cost than they did the last time I bought a camera!  Which was just 2 years ago.  For about what I spent on our current 3 megapixel, I can now get a 7 with major zoom.  I think I'm going to get an inexpensive photo printer as well.  But that might be mine.

One more thing... I did something stupid, and brought a new nutrition bag and 3 cans of nutrition to work.  But forgot the pump.  So, instead of going home, I decided that I would just have to eat a real meal at lunchtime.

And eat I did!  You guys... I ate a WHOLE CHICKEN BREAST!!!!!  And some rice.  That's the first time I've eaten a whole chicken breast since surgery last November.  Now you watch... I'll probably be exhausted as my tummy tries to digest it...

Look what my silly Daddy did!!!!  He said that if I was going down to peach fuzz, so was he.  And when my peach fuzz falls out, he's gonna take the rest of it off.  I hate to say it, but he has a heck of a lot more peach fuzz than I do!!!!

Today my head looks like an over-loved stuffed animal.  It has 1-2" bald spots all over.  Actually, in the past 2 hours, so much has fallen out that Paul told me to put on my turban and not look in the mirror until he has a chance to shave it off for me tonight.

We're going to shave it tonight.

The alopecia has started full force.  Handfulls upon handfulls of hair are coming out.  I'm distressed about how much of it is gray!!!

*Sigh*

It's just hair.  It's JUST hair.

Well, thanks for the compliments on the hair.  I do like the biker chick hair, too, and will wear it sometimes.  But the calmer hair is more me.

I've been having night sweats.  Not just kind of sweaty.  On Friday night, I felt like someone took a bucket of water and poured it over me from head to toe while I was in bed.  I was soaked, the sheets were soaked, the pillows were soaked, my skin was wet.  It was pretty bad.  Taxol causes night sweats, and is just emphasizing the menopausal sweats.

But we now have a plan.

I sleep on a bath sheet, with another towel over the sit-up pillow that I have to use and my regular pillow.  I also have a "Chillow," which is pretty darned cool. When I have one of those big giant episodes, I just get up, pull up the bath sheet, use it to get dried off, change clothes (new ones are waiting at the end of the bed), lay down another bath sheet and go back to sleep.  I also have the ceiling fan on, the window open, and a small fan on my bedside stand that blows directly on my face to keep me cool.

The first night that one of these giant ones happened, I just sat in the bed and sobbed.  Paul took care of getting me dry and tucking me back in.  My mom reminds me (she's right) that I only cry when I feel out of control, and I felt completely out of control.

I just wanted to point out that each of us say "In sickness and in health" when we get married.  My sweet husband is living this part of his vows out.  He went to the doctor with me for the first time a month ago, and since then, I think my illness has become more real to him.  Not that he didn't know that I was sick, but it really hit home then, I think.  Since that visit, he has been more in tune with what's going on with me.  Without me even asking.  He's checking up on  my meds, doing what he can to keep things calm when I'm stressed, picking up prescription after prescription after prescription.  Driving EVERYWHERE.  And when I wake up at 2:00 am sobbing, he gets up, dries me off, changes my PJs and tucks me back in.

He's a good egg.

Similar to the contracts of their youth, we typed up a very concise document for Ciera tonight.  We told her that we really don't want to spend more than 5 minutes on discipline for any offense.  We typed out the House Rules, Her Chores and Responsibilities, Penalties for failing to do her chores or for breaking house rules, and our expectations of her behavior.

She read through it and said that she could accept it.  So... no more lectures.  I'll copy and paste it to the bottom of this post in case anyone is interested.  I'll work on Meleia's tomorrow.

I did something stupid and got very distracted with a problem at work this morning and forgot to hook up to Ms. Pump-n-stuff.  I tried to catch up, but it made me feel icky, so I've had less than 2 cans of nutrition today.  I may crank it up a bit tonight and see if I can catch up some more.  Dumb, dumb, dumb...

The boys went skiing this weekend.  Colton tried snowboarding for the first time.  The primary problem with spring skiing?  The sun is BRIGHT.  I have 3 roasted boys.  Colton and Rohan have their spring concert at school tomorrow.  Bless their hearts...  Colton asked me if I thought the burn would be gone by morning.  Umm... no, honey, I don't.

Have a good evening.  Here's Ciera's rules, etc...

House Rules:

1. No computer before homework and chores are completed.
2. Chores are to be completed as soon as possible when returning home from school.
3. On Saturday, chores are to be completed before 1:00 pm or before any recreational activity will be approved.
4. On Sunday, chores are to be completed before any recreational activity will be approved.
5. Computer rule does not change on the weekends. 
6. No phone calls after 9:30 pm on Sunday or a week night.
7. No phone calls after 10:30 pm on Friday or Saturday night.
8. The cell phone is to be returned to the kitchen by 9:30 pm on weeknights and 10:30 pm on Friday or Saturday night.
9. Additional chores may be assigned by the parents.  However, this does not excuse you from doing your basic chores.
10. Respect is due the parents at all times.

Ciera’s Chores:

1. Feed and water the rabbits each morning before school.  Weekends before 10:00 am
2. Clean the kitchen daily.  Just because the dishwasher is running does not mean that the kitchen is clean
3. Take your stuff out of the bathroom daily.
4. Room spotless clean on Saturdays.
5. Homework

Penalties:

1. If you use the computer without permission, or you lie to one parent and gain permission fraudulently, the computer is taken away for the next day.  This also applies if you do not complete your chores on any given day.
2. If you are disrespectful, you will be given a warning.  “That is one.”  After the warning, if it happens again in the same day, you will not be allowed to do anything but school, church, and home for 3 days.  If in that three days there is another disrespect issue, 3 days will be added on.
3. If you parent your siblings, the computer will be taken away for 2 days.  Penalties are served consecutively.
4. If you blow bedtime or the phone curfew, you may not use the cell phone the next day.
5. Other penalties will be decided upon based on behavior.

Expectations:

1. You will be cheerful and easy to get along with, especially in the morning.
2. You will go to bed, lights out, by 9:30 on school nights.  This is no longer negotiable.  Plan your homework/chores/showers around a 9:30 bedtime.  If they are not done by 9:30, you are still going to bed, and the appropriate penalties will apply.
3. You will do your chores on time without hesitation, arguing, or nagging.
4. You will show the appropriate respect to both parents at all times.  If you are respectful and do what you’re asked to do cheerfully, then there will be a lot less conflict in the house.

My new hair arrived last night.

I'm trying my darndest to get a picture emailed from my phone.  I've sent it twice to my work addy, and nothing.  I just sent it to my personal addy.  We'll see if THAT goes through.

It looks, well, pretty much like me.

This morning, in the car, we were on the way to school.  Colton wasn't home yesterday when the wig arrived and we had a try-on session and all ooohed and aaahhhed over it.  So, half way to school, Ciera said, "Mama, I really like it.  It's cute."  And poor Colton says, "Wait... that's a WIG?!?!"  Ciera teased him that my hair hasn't looked that good in MONTHS.  Thank you, dear.

Paul said, "Just like me, he just sees his Mommy as beautiful..."  Everybody say AAAWWWWW....

And there you have it.  The "new" me.  I also cropped it so that you could see the beautiful family portraits above the television.  They just make the wall!

A WORD WITH YOU
By Ron Hutchcraft
#5294 - "The Reason for the Wait"
Psalm 37:5

    Isn't it amazing how different your second child can be from your first child? Just when you think you've got this parent thing figured out, God sends you a totally different kid. For example, food has always been sort of a necessary evil for our son's oldest, our granddaughter. She can take it or leave it. Since infancy, she hasn't cared much about whether or not she had food. Not her brother! Oh no! This kid is an eating machine. He's only about a year old, but he's been Food King much of his little life. When he was still supposed to be only having milk, he was following every bite any of us put into our mouth as if to say, "So when do I get some of that stuff?" How did he graduate to crawling? One thing that helped was putting some food across the room. He took off on all fours like a firecracker had gone off behind him. The other day, his mom was mixing up his next meal, and he was watching and complaining. As she continued to get it ready, he continued to escalate his expressions of impatience and displeasure. By the time his food was ready, we were dealing with a very loud, very insistent protest.

    I'm Ron Hutchcraft and I want to have A Word With You today about "The Reason for the Wait."

    Our grandson didn't have the words to say it, but he made his desires very clear as his food was being prepared, "I want my food, and I want it NOW!" It's a good thing his mother didn't give in. It wasn't ready yet! Believe me, it wouldn't have been good for him to get what he wanted when he wanted it. It would have been, in plain English, bleaaahhh!

    I can't begin to count the times I've been the same way with God about something I wanted or needed. "What's taking so long, God? I want it, and I want it NOW!" Maybe there's something you've been asking and trusting God for a while, and it still hasn't come. You want it now, but there's a reason God isn't giving it to you now. It's not ready yet. And it would disappoint you if He gave it to you now.

    There's a word that's one of the major keys to God's best, a word that is spelled out in our word for today from the Word of God. Psalm 37, beginning with verse 5, tells us to: "Commit your way to the Lord; trust in Him and He will do this ... Be still before the Lord and wait patiently for Him ... Wait for the Lord and keep His way." There's the word that often stands between you and God's best - wait. Part of committing your way to the Lord, of trusting in Him, is to wait until God says it's ready; until God says you're ready. So many people are living today in the heartache of their own impatience. They couldn't wait, so they grabbed what they could have now. And it's been much less than what God was getting ready for them.

    You've been waiting for God to come through. You want to be married. You're waiting for Him to answer your prayer about having a child or raising a child. You're waiting for that job, that heart change, that breakthrough, that answer, and it hasn't come yet. Don't panic. Don't let impatience cost you the perfect will of God. Premature babies aren't as healthy as ones that are full-term. Premature solutions aren't healthy either. Wait until it's full-term. Remember the principle of Galatians 4:4, "In the fullness of time, God ..." God will bring you your answer when it's ready. So stop whimpering, stop whining, stop trying to grab it before it's ready. If you insist on having it now, you're not going to like it!

Well, this morning, I woke up and got up to go to the bathroom, like normal.  And my feet felt funny.  Kind of like they were asleep or swollen.  Or asleep and swollen.  But they were not swollen, and there was no reason for them to be asleep.

So, it appears that I have Neuropathy.  Here's something that I found on Taxol and Neuropathy so that you guys know what's up and what we're facing:

What is neuropathy??? Neuropathy literally means "disease of the nerves". Neuro- refers to nerves and -pathy refers to disease or dysfunction. Some of the symptoms of the type of neuropathy most frequently caused by chemotherapy are:

• tingling (feeling of needles and pins) and burning,
• loss of sensation to touch,
• pain in the affected areas,
• loss of positional sense (knowing where a body part is without looking), and
• loss of balance.

The most common areas of the body affected are the tips of the extremities (fingers and toes). This sensory loss may move gradually upward in a stocking-glove type fashion (as if you pulled a long glove on your arm or a knee-high sock on your foot and leg). This is called peripheral neuropathy. Sometimes other areas of the body (face, back, chest, etc) are affected. Some literature suggests than neuropathy can cause or worsen constipation and conditions such as ileus (intestinal obstruction).

Although some of the signs of neuropathy may appear suddenly, this change in sensation usually builds gradually and gets worse with each subsequent dose of chemotherapy.

It is usually strongest right after a treatment but tends to lessen just before the next treatment. The symptoms usually peak about 3-5 months after the last dose was taken. The abnormal sensations may disappear completely or lessen only partially; they may also involve less of the body. If neuropathy diminishes, it is a gradual process usually requiring several months. However it may be irreversible and never diminish in intensity or the area of body affected.

You may have heard that we got a flash blizzard yesterday.  At our house, we had about 15 inches that drifted to 3 feet+ in places.  It took a very long time to get home from Compassion, and I couldn't get in today.  About the time Paul got us dug out enough for me to go in, we lost our power for 4 or 5 hours and I couldn't take a shower.  The joys of a well... no power, no water.

I was able to work by battery on my laptop, but not being able to be connected to any network made it hard.  When you're a programmer, you need to be able to check your code in small steps.  Doesn't work well when you can't.

Oh well.  At least we have power now.  There are some folks who aren't going  to have power before Saturday.  We were phoneless for about 2 hours prior to the power going out.  We had just gotten the phone back when the power went out.  Yucko!

Well, my children have been outside some today, which is good, because they have MAJOR cabin fever.  Two snow days at the end of April is a bit much for them.  Ciera has had time to catch up with her schoolwork and housework, which has been a blessing for her.

It will be good for them to go back to school tomorrow.

My hair is getting really thin.  I found a major bald spot yesterday, and so I wore a hat to work.  At one point, it got really warm, but it was cute.  One of my family members sent me a gift certificate to a great hats website, and I bought a cool turban that has a way for you to thread scarves through it to change the look.  I think that turban will be perfect for the days that a regular hat is just too warm.  And I can buy fabric to change the look whenever I want, so that'll be great.  I did order 2 extra scarves to go with the turban, so I'll have 3 looks to interchange from the get-go.

Y'all have a great night.  I'm off to take a shower...

Happy Monday, all.

I wanted to let you all know that this weekend went swimmingly as far as my health goes.  I'm having very severe heartburn, but the doctor has called in a prescription that I will start taking tonight.  He said that I can take Maalox if the prescription doesn't work right away, I just have to leave a window around my Coumadin.

My pain level is decreased SIGNIFICANTLY, and I am so happy to be nearly pain free over the weekend, and now.  Yes, they had to double my pain meds to get there, but we got there.  I was resistant to making this move for some reason.  And I think it's totally psychological.  If  he had doubled my OxyContin, I would have freaked out.  But to double the strength of a patch?  No biggie.  How strange I am.  Oh well.  It has worked, and for that I am thankful.

I'm in a bit of a fog, but that's just what they call "Chemo Brain" according to the nurse I talked to.  She said that my issues with memory on Thursday (chemo day) are probably attributable more to my pre-meds than the chemo itself. I guess I got a humongous hit of Benedryl with my pre-meds.  I'm having a lot of trouble remembering things from Thursday, and it's driving me slightly batty.  Stephanie was with me through the morning, and then my cousin, Debbie, came.  I kind of remember the "hand off" where Steph left and Deb came.  But I don't remember much of anything with Deb that afternoon.  I do remember that she has a new car.  Can't for the life of me remember what kind it is.  After she left, I panicked thinking that I hadn't said, "Thank You" or even "Good-bye."  But Meleia assured me that I had.  That's the stuff that's driving me crazy.  I also need to have my blood drawn every week on Thursday.  I don't remember those instructions.  I only know that I have a prescription in my purse for weekly blood draws.  Ay yi yi!

This morning, I got dressed for work, and put on a cami with a suit jacket, knowing that normally on Monday, it's cold in the office.  I got here, and was burning up from the exertion of walking to my cube.  I called Paul to bring me something different to wear since I couldn't take off my suit jacket, and by the time he got here, I was freezing.  So, the fun of hormones and lack thereof just continues!

On the hormone front, we did find out that my tumor does not have hormone receptors. I will not be able to take Tamoxifen and have it be effective.  Now, Dr. H is open to trying it anyway, thinking that perhaps it was a sampling error, and that the tumor might have hormone receptors.  I remember him saying something about it not being well-differentiated or something.  Something to the effect of the cancer not being consistant across cells. But we'll cross that bridge when we get to it. Especially since I don't remember it.  It doesn't seem to make a lot of sense that it's not a hormone fed cancer when getting my hormones in order was what triggered the pain and apparent growth of the cancer in the first place.

I am still pleasantly shocked at my reaction to Taxol.  I was so afraid of how bad I would feel, and with the exception of the heartburn, I'm doing so well.  When I was on weekly chemo during radiation, I felt so lousy for a few days.  This time, when the drug was stronger, I really didn't feel that bad.  My mom says it's because I'm stronger, too.  I'm just happy that I can handle a 3-week dose without problems.  Next hurdle is my CBC on Thursday, but we'll see what happens with that.  I have permission to work from home as much as I feel that I need to so as to not get sick when my white cell counts are tanking.

On the Wish front, I am contacting Wish Granting Agencies today and tomorrow to see what we need to do to get to Walt Disney World.  We have already had 3 day passes donated, which is a HUGE blessing!  This is really going to happen.  I can't wait!!!!

On a personal note, I was blessed beyond measure to have my Grandmamma here this weekend.  I had chemo on Thursday, and she flew in on Friday.  She kept an eye on me, and we got to visit and talk.  She got to see the girls get dolled up for their dances, and go to dinner on Saturday with the boys and Meleia.  Today, I'm installing "ding" from Southwest since my friend, Amy, found tickets from Nashville for $50 each way last week.  Maybe Grandmamma can be here more often at those prices!

OK, it's Monday and I have to get to work.  Thank you for all of your prayers and support.