Here is a little song I wrote this morning as I was getting ready. I thought in honor of Christmas I could borrow the tune from “Oh Christmas Tree”

No estrogen no estrogen oh how I loathe no estrogen No estrogen no estrogen oh how I loathe no estrogen My skin is dry as sand you see my lips are cracking as we speak No estrogen no estrogen oh how I loathe no estrogen

DRY mouth, otherwise known as xerostomia. Not once in my life did I ever think I would have to know about it, much less experience it. Well, maybe I did experience it once in Mr Berg’s class where I had to give an oral report that was not close to being done because I decided to go to the basketball game instead. Either way I never expected to know anything about it, or that there was such a thing as “numb chin syndrome” or what words like “aromatase inhibitors” meant or that veins have valves. (Home school moms, are you taking notes?) I didn’t know you could start shrinking at age 44 or that hair doesn’t grow back lush and beautiful after radiation. I also didn’t know you could make such good friends in such a short period of time, that pain draws people together and that there are people who laugh WITH you not AT you when your wig falls off.

The side effects of the radiation to my jaw have now begun. The inside of my mouth feels like a MacDonald’s lawsuit except that I didn’t have any coffee at MacDonald’s. It just burns.

Realizing that sometimes life is better through pharmaceuticals, I will be stopping by Walgreens today to pick up something for the raging inferno that is now my mouth.

Yesterday was hard. I spent the morning driving from Anacortes to the hospital in freezing temperatures…I think we had a high temp of 22…(don’t think I can’t hear all of you saying “22 that’s nothing…it was -2* at my house)well, this is my blog and I can be cold at 22* if I want.

My first appointment of the day was with an Orthopedic Surgeon. He was reviewing the myriad of x-rays I had last week to decide whether or not to put pins in my arms and legs…Thankfully he didn’t think it was a good idea, but on the not so thankful side was the amount of times he repeated, “Your disease is very advanced.” “Look here, it’s even in these tiny bones, you don’t see that often.” “Wow…there is a lot of disease there.”

So on top of the burning tongue, radiation fatigue, insurance problems, super dry skin,freezing temperatures and the fact they didn’t validate, I sat in the lobby too exhausted to even cry. I began a war with myself. I fought with myself through the rest of the day and into the night. Where does the trust go on super awful days? How do you keep fighting when everything is sucking the life out of you?

By the morning I decided I can’t be the one doing the fighting. I need to be the one resting…resting in what I know is true. Oh I will take my crappy medicine, and endure the crappy side effects..because that’s all part of it.But I am going to let someone much stronger than me do the fighting.

Now, back to the lobby. As I sat there hunched over and void of energy, super mom took out her cell phone, called the insurance company and within 5 minutes I had my chemo medicine authorized at a cost of $35 a month. Yea super mom. The battle rages on but now it’s more affordable…(gotta find a silver lining somewhere!)

I have a very dear friend here in Anacortes. She is amazing, along with her husband and kids…and I don’t say that lightly. Every once in a while she calls and reads to me from The Little Book of Prayers to offer me encouragement.

During one of those phone calls we started to chuckle about how different the prayers would be if she wrote her own version of TLBOP. We are both going through some difficult, painful, baffling, confusing times right now.

She decided that her prayers would be a little less elegant. For example, here are some exerps from pages 1-5: 1.WHAT? 2.HOW AM I SUPPOSED TO DO THAT? 3.NO NO NO NO, THAT WASN’T WHAT I ASKED FOR 4.I HAVE DONE THAT ALREADY! I DON’T WANT TO DO IT AGAIN. 5.THIS IS RIDICULOUS…AKA…THIS CAN’T BE HAPPENING.

I borrowed a prayer out of the newly revised version yesterday as my tongue burned and all the skin on the inside of my cheek began to peel off like a blister, and I couldn’t eat or drink anything. Then just for fun I woke up with a very sore throat! Page 5 works for me.

I woke up this morning with very little fight in me. Pondering this. I sure don’t like how it feels.

My cart is overloaded…I know I am not the only one. Cancer is HARD…life is HARD…heck, let’s face it, doing anything without caffeine is hard.

Between the mouth sores, sore throat, chemo, head cold and radiation fatigue… the FIGHT in me has taken a small hiatus. I think it went to Hawaii. God knows how much I like Hawaii so He was kind enough to send it there…cuz the truth of the matter is, that like this donkey, there is NOTHING I can do about my situation but hang out and wait… oh, it’s not the least bit comfortable but flailing around will just make it worse.

So for you homeschooling moms, the spelling/vocabulary word for today is “hiatus”…please spell it, then use it in a sentence today…

For everyone else…God knows what we need…just relax…no fair eye-rolling.

It is hard for me to believe that another year has gone by. This time last year I was just coming off a radiation treatment…I was behind in my shopping..I didn’t have all my Christmas cards mailed and Chad was asleep on the couch. Nothing has changed. Well there is one thing that is different…last year we had snow…more snow than I have seen in the past 15 years at least.

I am a snow lover. I am sure that all of you who are reading this on East Coast are saying “What? Is this woman out of her mind?” I am a snow lover because it makes everything look clean again…the world seems quiet…it turns ugly things uniquely beautiful…oh and around here is melts pretty much by bedtime.

I really thought that by this time there would be more differences than snow. Praying for a Christmas miracle and a little snow.

It was the night before Christmas and inside my house, my kids high on sugar and not a word from my spouse. Our stockings were still in the attic upstairs everyone was too tired to get them down from up there.

Only half of the presents were wrapped thanks to me I think the rest will be wrapped but we’ll have to see.

In our “jammas” the parents took our pills plus 3 more, one for sleeping, one for acid, one so that Chad wouldn’t snore.

Despite all the pills I woke to a “beep”. I became a bit angry as I really need sleep. My daughter was up at 15 past 4:00, making the dinner she should have had the night before.

Now awake with adrenaline I couldn’t sleep, I began counting hay bales instead of the sheep.

I worried about cancer and then driver’s ed. I wondered when I last washed the sheets on my bed. I wondered and worried why it’s taken so long, to cure cancer and everything else that is wrong. And then I remembered that it was Christmas Eve, and God was much bigger than this stupid disease.

So I rolled my self over which is no simple task, and I moved to the left and then I asked,

“I don’t know what you are thinking, I don’t know what’s ahead,” I paused to listen and then I said, “Can I whisper to you what I want instead?” I closed my eyes softly and then turned my head…

“I want a gift that no other can possibly give…I want the cancer to go… I want to live.”

Every day…more and more…I realize that I have no control…kids, health, life, people in my life, weather, finances, gas prices, untimely blemishes…”Do I have milk? Do I need milk?”

The beauty in this true story is that it although it is scary to admit that you have zero control…it sure takes the “Boy, I really blew it” out of life.

AAAhhhhhhccchoooooooooooooo! Bless me!

Room 254 bed 2…that is where I am right now..if you had asked me yesterday where I would be now I would have answered “home, in Anacortes”. Well, I am not…again, serving as a fine example of life out of my control.

I arrived at my Dr.’s appointment yesterday as scheduled, and ended up having yet another blood transfusion today as NOT scheduled…the transfusion came with two eggs,scrambled, whole wheat toast and a single tall latte. (latte courtesy of super friend Traci, who is ALWAYS fabulous for providing coffee, magazines and some laughs.)

According to mom, who patiently sits with me, there is emerging color in my cheeks.

Yummy Yummy red blood cells, making me feel better. The Dr. thinks the combination of the radiation, new chemo, and rapid weight loss/dehydration…are the cause. I think he is a smart man who knows whereof he speaks.

So in my out of control world my veins are gulping down healthy blood and I become more and more aware of God’s amazing attention to the details.

I am finally home. I left Anacortes before Thanksgiving to undergo 3 weeks of radiation to my jaw and my knee. This turned into my being away from “home” for over a month.

With all that has happened I was looking forward to coming home and relaxing…a cup of coffee, some TV, a long hot shower and days spent in my p.j’s. What kind of fantasy land was I thinking I lived in?!

I came home to dishes in the sink, Christmas present chaos, unfinished laundry, suitcases to unpack, unpaid bills, papers to sign, kids to chauffeur, counters to clean and I think we are out of toilet paper…again.

If you know me, you will chuckle at the picture above because I am ALWAYS writing everything I need to remember on my “palm” pilot…aka…the palm of my hand. You see, this way I can’t leave it at home, or in the car, or loose it on the desk or in the abyss that is my purse.

With all that I have to do, I think I will actually need both palms in the next few days. So much for resting…

Sleep is important. Sleep helps you have energy for the day ahead. Sleep provides you with a little more patience in a stressful situation. Sleep makes you look and feel better. Sleep keeps you from taking your daughter’s cell phone away and telling her that if she ever wants to see it again she better get downstairs right this instant and empty the dishwasher!

Sleep is also when your body does most of it’s “reparation” (Homeschooling mom’s this is the word for the day). As a person with cancer…I NEED SLEEP!

Here is part of an article that a bunch of Dr’s wrote:

• A new study shows that how well you sleep may determine how well your body fights cancer — and may help explain how mental well-being plays into cancer recovery and progression.-

Herein lies the problem…Chad snores…loud…a lot…keeping me from sleeping. I have tried the smacking, elbowing, kicking approach, but the results are only temporary. Nasal spray, throat spray, giant glasses of water, yelling “You’re snoring again!”, lots of pillows, no pillows, melatonin, earplugs, FOR THE LOVE OF PETE I NEED TO GET SOME SLEEP! Speaking of which, it is now 10:25 PST…the Breathe Right extra strength nasal strips are strategically placed in the center of his pillow…a gentle note to remind him is on the bathroom mirror…something to the effect of “if you have plans to ever sleep again in this lifetime, then you better use those strips..because if I am awake then you’re awake”…Love your wife.

Goodnight…

It’s almost 5:30 a.m. I have been awake since 4:00. I pulled a muscle in my side trying to put a gallon of milk in the car yesterday and it hurts. The tips of my fingers and the soles of my feet are “sunburned” from the chemo pills. It’s hard to hold anything hot. Every day I seem to wake to sad news…hardship..shifting reality.

I sit propped up in bed thinking and praying and listening. My mind bounces from one friend to another…from family…distant and not so distant. Within this small circle there is pain. There is pain, illness, loss, disappointment, despair, sadness, death,anger and hurt. There are hospitals, and medicines, funerals and questions. But it’s funny. As I sit here, in the dark…within this same circle there is love…so much love. Each one of us suffering in our own lives yet wanting so much to help the other. Calling each other to be present in their pain, texting “I love you” messages throughout the day, listening, crying, laughing, supporting… This my friend, is the beauty that lies in the true story.

Let me just start out by saying Dang-nab-it! (just keeping it clean). When I woke this morning it seemed that everything was in working order. When I stood up I realized that this wasn’t the case as my knee buckled underneath me. Although there were various 4 letter words that I wanted to use, I stuck with OUCH…at least that’s the story I am telling…

Instead of feeling better like it was supposed to, my knee is worse…so much so that I had to pull out the big guns. I am taking the big girl pain killers and my cane is coming out of retirement, at least for today.

Now, this is not the knee that was recently treated, it’s the other knee. I don’t know if it’s just jealous because my other knee was getting all the attention or what, but either way it appears that it too will need treatment. This sucks, I mean stinks(sorry home schoolers) I just got home, I just unpacked, I just started making OTHER plans.

As of this moment, I am waiting for the Dr. to call. Do I treat the knee or not? How long will it take? Do I re-pack and start today or wait until Monday? If I start Monday the avalanche of new problems begins to slide…driver’s ed…horse weaning…meeting with school counselor to discuss Emily’s not so motivated approach to graduating with her class next year. I actually believe that she has goals, the primary being winning a very large amount of money from the Guinness people for the most text messages written in a 24 hour period, thus providing her with enough $ to bypass further education options and begin her PRP otherwise known as the Pit bull Rehabilitation Project.

Here again, I am just in the passenger seat on this. The one who is driving knows best.

Criss cross applesauce…sometimes it is the BEST place to be. XO

It’s late. I have to be up early for an appointment, then back on the road home again. I had a conversation with my daughter tonight over the phone. She is struggling with her grades a bit..cough choke…let’s just say that graduating next year looks pretty grim. She is a very smart girl. She has always tested years ahead of her grade. She has Asperger’s Syndrome…her thoughts are very literal…evidently this prevents her from turning in ANY assignment that she doesn’t see as being of use to her. I have tried…oh Lord I have tried…to no avail. I could give seminars on all the things I have tried…and she could give seminars on “How to have an excuse for everything that happens in your life”

She is 18…she is smart…she can ace every class if she wanted…she just doesn’t see why she should bother with it. Asperger’s is a tough one..one foot in each world. I think it’s time I stopped trying to “fix” her. It’s time to let her go. I guess I have to let it ALL go. It’s easier if you say it all at once…like it’s one word “LETITGO” Say it with me…letitgo

RX repeat it twice and call me in the morning…no too early please.

Happy Birthday Dad. This has been a “great” year for you and I. We’ve had our issues…we’ve learned so much…we have struggled to get out of the chair in the living room…we have perfected the art of “slow down” and we have been able to be together a lot. Yipee.

As for the coming year…”It’s all good!”

xoxoxoxoxoxoxoxoxoxoxoxoxoxoxoxoxoxoxoxoxoxoxoxoxoxoxoxoxoxoxoxoxoxoxoxoxoxoxoxoxo

This is my new cancer medicine. It looks like a pill but it’s really chemotherapy. I take 4 of these in the morning and 4 at night. In your body it changes into something called 5-FU (which is ironic don’t you think?) Anywhoooo…it then changes something about something in the cancer cells making them do something they shouldn’t do causing them to die…It effects healthy cells as well but because there is something in the cancer cells that is not in the healthy cells, the something in the medicine doesn’t really target them so much and they don’t die as often. This information is straight from the pamphlet.

HOWEVER, there are side effects. I am experiencing one of those side effects right now and it is called Hand and Foot syndrome. I believe that the same person who thought of the last syndrome I dealt with (numb chin syndrome…I swear…look it up!) also came up with Hand and Foot. Wow I want that job!!!

Hand and Foot effects your hand and feet. This too is straight from the information pamphlet. Sometimes it actually effects your hands and feet, sometimes just your feet…blah blah blah. Anyway, it hurts. It feels as if someone is holding a blow torch to the soles of your feet. This is both painful and inconvenient. So far I am unable to find anything that will help other than standing on a bag of frozen peas. Sadly peas don’t stay frozen forever. Anyone have any suggestions other than going ice fishing and dangling my feet through the hole in the ice?

This was my list for yesterday. After my appointment at 9 am I was committed to doing “NOTHING” for the rest of the day. Well “nothing” turned into “something” quickly when I asked the nurse about my puffy ankles. It turned into the nurse needing to talk with the Dr. The Dr not being there to talk to. Mom and I waiting for an hour in the waiting room. A blood draw to check potassium levels…more waiting…being sent to another wing of the hospital for a Doppler ultrasound of both my legs from the hips down to check for any blood clots…returning to the Dr’s office where we waited for a prescription.

All of this was happening while another parallel day was going on simultaneously. Mom was tracking down every single medical expense for 2009 to help with taxes…every radiation visit, every Dr visit, every scan, every x-ray, every Dr I saw, Chad saw, Joe saw, Em saw..the dentist, the walk in clinic, all our prescriptions, parking, mileage…how many times we inhaled and how many times we exhaled…

Then there was the parallel day taking place in Anacortes. Kids to school, Em to drivers ed, ride home for Em from drivers ed, horses being trailered , weaning started, communicate with everyone involved in that issue , power outage of ATT cell towers (not my fault)communication nightmare.

All in all…it was a 3 in 1 day of H-E-double hockey sticks!!!! I am home now…home as in Anacortes. The treatment is done for now. I am going to take a nap for approx. 1hr and if anyone calls me…well…nothing will happen really…just don’t call for a bit please.