Scatter brained

Things have been slightly hectic around here the past week or so.

Richard's pain continues to worsen, he is now on even more pain meds. He is sleeping more throughout the day and taking it easy for the most part.

I got really great news last week. Someone that has worked for the Hospital for well over 20 years wanted to donate 480 hours of their sick time for me to use when I take my FMLA to stay home with Richard when the time comes. I was elated.

It didn't last long as the next day I spoke with the Leave Coordinator and I can't use the donated sick time for FMLA to take care of Richard, it can only be used if I was the one that was sick and needing off. So then I was really bummed and feeling pretty low. I mean possibly 12 weeks, 3 months without pay. (insert scream)

I am more than stressed out about how we are going to pay all the bills when I have to take off. Plus since I won't be getting a check from the Hospital I will have to pay them my part of our insurance. Which is $500 bucks a month. And of course I have to keep my insurance for Richard to be able to get the care he needs. So that plus all our regular monthly bills... well it's more than I want to think about right now.

Then there's funeral cost. This may sound morbid to some but so far this week I have spoken to 3 different Funeral Directors trying to "bargain shop" if you will. We have an appointment the end of May to go make pre-arrangements so that at least some of it will be paid for. Richard doesn't have any life insurance because he has had a chronic illness all his life and they don't give life insurance to people with a chronic illness. If you ask me I think they are the ones that need it the most. Did you know that your basic funeral cost no less than 7 grand. I suggest that if you don't have any life insurance you check into it as soon as possible cause none of us are guaranteed our next breath. It ain't cheap to die.

I do have good news for all of those that have been asking how they can help. We are in the process of establishing a Trust Fund for our family. You can donate any amount of monies to the fund and it will be used when the time comes for me to take off to be with Richard, it will help support our family during that time as well as help with funeral cost. More about this later.

Speaking of the Trust Fund the lawyer we found is doing all the paper work for that pro-bono as well as the adoption of the boys. I still can't believe it. Please pray that my ex will do the right thing in signing over his rights. When this takes place the boys will have entirely new names that we all picked out together. When it's official I will share them with you.

This past week or so I felt overwhelmed, like everything I was trying to do I just kept hitting walls. I am still pretty stressed out about everything. I mean casket shopping is not like car shopping. It is not something I ever thought I would have to do at this stage in my life. I don't know how we are going to be able to afford me taking off to take care of Richard as his cancer progresses. I don't know where 7,000 dollars is going to come from to pay for funeral expenses. I do know that I have to do it now cause when the inevitable happens and my hubby goes on his permanent glorious vacation (this is what we call it for the boys sakes. it helps), I will not be able to then. I am scared of how quickly things seem to be happening. I know it is only a matter of time before he will no longer be able to drive or do anything for himself. This scares me beyond measure.

All I know is that God is God and nothing is to big for Him. I know that He will provide us with everything we need. It's just a little scary sometimes, thank God for the peace He continues to give.

I know it will all be Ok it's just a little hard to see through the tears right now.

In the Mirror...

Every morning I get up drink my cups of coffee and proceed with my regular morning ritual.

Every morning I pull my hair back, wash my face with Noxzema, apply moisturizer and then begin applying my make-up.

Every morning in the same house, same bathroom, while looking in the same mirror as the day before.

This morning I caught a glimpse of someone I barely recognized looking back at me.

The eyes were tired, weak, weary and sad. The longer I looked the deeper they became.

This is not me. I am not tired, weak, weary or sad.

Yes it is you, I heard the voice inside my head saying.

WHAT!?

I looked away. I could no longer look into those eyes.

I cried. My own eyes made me cry.

I don't want to be the person staring at me in the mirror.

I know that my patience has been wearing thin, I have not been the spunky, outgoing person everyone knows. My emails have been short and lacking as well as my Instant Message conversations. I'm sorry if it was you on the other end.

I realized I am not as strong as I thought. I can not continue on doing this alone. I need to pass my burdens on...

to God.

He's there I know that. Jesus, me and Him are tight. We talk all the time. Ok, so I talk He listens. It works for us that way cause I talk and talk and talk and he can't get a word in edge wise. But when he does, I certainly listen.

I know that I have to continue to turn this over to Him. For some reason I can't. My heart is heavy. Let Go, Let God as Lula once told me.

I have to, I had to... I did.

For my burdens are not mine to have to bear alone.

I've known it for some time but I just realized it while looking in the mirror this morning.

Thank you God for letting me see the me that I don't want to be. Thank you God for taking the burdens without question. Thank you for guiding me along this road. Thank you for letting me see... me.

Just...

thank you for the Mirror.

Update

Today as I sat beside my husband holding his hand waiting for the tech to call him back for the scan I felt this overwhelming sense of feeling completely terrified. Just as quick as it came, it was gone and I knew it was none other than my God.

I am not saying that I am not scared or terrified because I am. I am just saying that I am comforted to know where my husband is going and who he will be with when he's no longer with me. I will miss him more than I can even imagine but I won't wish him back, not for him to be like this.

Today we knew would be rough. We knew the news we would receive would not want to be heard.

We arrived did the usual labs, scan and then waited for the Doctor. He wasted no time getting in the room to see us. He preceeded to explain that the Radiologist called him due to the cancer being "Considerably Worse" and she wanted to explain what she seen.

Since we are no longer doing any treatments because they weren't working to begin with the cancer to continues to progress fiercly within Richard's abdomen. He now not only has cancer in the peritneum but he also has tumors in what the doctor called the "apron" that lies on top of the intestines as well as in his groin.

The radiologist didn't mention if there was any involvement of the organs. She did mention that the chest x-ray was conclusive to that of a Cystic Fibrosis patient and that the right upper lobe was compromised and appeared to have some infection. He is now on antibiotics for 2 weeks to hopefully prevent a hospital stay.

Richard was in so much pain that he couldn't even stand for the Doctor to touch his abdomen. They have upped his pain patch, teken him off the percocet and put him on some meds that are supposed to offer instant relief. We will try this regimen for 5 days if it doesn't seem to be working we will try something else.

Doctor P. didn't mention time frames but he did tell us to just enjoy each other and our family. We plan too.

Right now Richard is comfortable for the most part. Now don't think that he is not able to do anything. He can still do whatever he feels up to doing. Driving, being a stay at home dad all of it as long as he doesn't overdue. He is some kind of awesome and I love him so very much.

Now let's get off this Debbie Downer stuff for a little bit. I got my CD with the rest of the pictures that Tonya took of us back in December today. She even sent me the outtakes. I am so glad she did they show "US" I love them all but I will just show a few to you guys. I don't want to run you off or anything.

Ok so obviously I am not quite sure what a few is. I have a lot more though so be thankful. Oh and I have one more that is awesome.

Are you ready?

You sure?

Ok.

Wait for it.

Wait.

ok here it is...

AWESOME isn't it?

I think this shall be the one I have frmaed and mounted above my fireplace.

What do you think?

Lunch Break.

I'm here at work taking my lunch break, trying to relax after eating some fairly decent food out of the cafeteria.

However I can't relax. I can't seem to flick the shut off switch in my brain.

All I can seem to focus on is tomorrow.

Richard's scan is tomorrow morning at 8 we have to be there at 7 for the usual work up of labs. Then we see the Oncologist at 9 which after the past year has become like an old friend.

How is that possible? I admire Dr. P for his honesty, for taking on the role as the bearer of bad news for so many. The job he has I am certain is a very difficult one.

Pray for him, I do.

IF we get done there by 11 we are suppose to go to CF clinic just for a check-up. Depending on time and our emotions we may not make it there.

I am not looking forward to tomorrow. I am dreading it for many, many reasons.

Richard has developed more pain in different areas. That can only mean that the cancer has spread some more. With the touch of my hand on his abdomen I can feel these hard pearl like shapes. It's surreal to think that I can feel what is killing him.

He hurts all the time for the most part. We do have glimpses of pain free moments. But those are rare, far, few and in between. His abdomen is bloated making it hard for him to button his pants. Most days he is in pajama pants around the house. When he does go somewhere alot of the times his pants are left unbuttoned yet covered by his shirt.

Standing to long hurts, sitting to long hurts, laying to long hurts. And at night when he tries to roll from the right side to the left there is a moan that escapes him. He says it feels like his insides are pulling apart, so back to the right side he goes.

The cancer that Richard has, has a way of secreting a sticky glue like substance. It attaches itself to whatever is around it whether it be other tumors, intestines, liver, stomach it doesn't matter. It can also cause organs to fuse to one another. This is where the discomfort and pain comes in.

He now has chronic pain, meaning it never goes away. As far as the pain patches he is on they just make it a little more tolerable. They are no longer working like they once were and percocet seems to have become our new friend for those times when the patches seem to be completely noneffective.

I hate to see him hurt like this. Sometimes I feel completely and utterly helpless.

How did we get here to this place so quickly?

Yesterday my dear sweet friend Megan did a post about not being able to become pregnant after trying for the past several years and how she's upset by it all. She asked if anyone had suggestions on how they should be praying specifically for God to bless them with a child.

I couldn't tell her how to pray, yet I did tell her how I pray.

I no longer weep from the sadness my heart feels as I pray. I no longer beg and ask God for a miracle to heal Richard as I pray. I no longer ask that He give me peace to be able to handle the days ahead.

Why?

I have peace with it all. For so long I was looking for the peace that only He can give. I realized I had it all along I just had to believe it.

When I pray at night now... I am just thankful.

I still weep, yes but it's for completely different reasons.

It's because I am... Thankful that God has blessed us with the past 8 and a half years. Thankful that he has allowed me to love Richard completely, openly and honestly with all my heart. Thankful that He chose to give me a love like this. Thankful for the two amazing boys that I have been given. Thankful for the amazing father Richard is to our boys. I am thankful for all the amazing and wonderful people that He has brought into my life.

Most of all I am thankful for Him, my God, my Jesus, my Father, my Friend.

I just ask you to please remember us tomorrow as we know the news won't be good. Our peace in God will comfort us for I know this.

Also if you twitter I usually try to post updates there throughout the day while we are at clinic. My user name is wife2cfer.

A year, a milestone

One year has passed since we got the news that the cancer was back, in full force.

I have prayed so much for this time. For God to allow us this time.

A year has come. Where did it go? How has a year passed already?

For the last several hours I have been sitting here reading my older post from this time last year.

The chemo treatments, the aggrivations, the brokenness.

Some things have changed. There is no more Chemo.

We are not nearly as aggrivated by it all as we once were.

We no longer broken.

God has given us peace.

I thank God for this past year we have made some remarkable memories.

I pray that we have another and another, and another and...

How ironic that in two days we will be going once again for another scan and another visit with the Oncologist that has become like an old friend?

The only difference is we know that the news will not be good this time.

Richard hurts all day everyday. Sometimes it's more intense than other times.

The pain patch barely puts a dent into the pain he feels.

His appetite continues to decrease, the cancer continues to spread.

Yet through it all he amazes me.

I amaze me.

We have grown closer to each other, closer to our boys, closer to God.

I don't know if God will give us another year, but we will thank Him and praise Him for every second of every minute of everyday.

For He is God and this is His plan. We still do not understand but we trust Him.

Jesus said: "You do not realize now what I am doing, but later you will understand."

John 13:7

Happy Easter!

The Easter Story

Jesus came to compensate

For all the wrongs we do.

He came to earth to die for us,

So we’d be born anew.

"This bitter cup, let it pass from me,"

He cried, in a plaintive voice;

"Yet not My will, but Thine be done;"

He said, in His faithful choice.

The Judas kiss would seal his fate;

He faced a hostile crowd;

The governor, Pilate, saw through it all;

Jesus’ guilt he disavowed.

"I wash my hands of all of this,"

Said Pilate, "Let Him be."

But the crowd yelled

"Crucify him now,And set Barabbas free!"

Pilate yielded to their wish;

And Jesus was led away.

The soldiers beat him, and mocked Him, too,

Yet He continued to obey.

A crown of thorns lay on His head,

As His sentence was carried out;

His hands and feet were pierced with nails,

But He did not scream or shout.

"Father, forgive them for this crime;

They know not what they do.

"He said this despite His torment, because,

He was thinking of me and you.

"It is finished," he sighed in His anguish and pain,

As His body gave up to death.

The curtain tore, and darkness fell,

After He took His last breath.

The best of the story is the very last part;

It’s why on Easter we’re filled with pleasure:

Death could not our Savior hold;

His power is beyond all measure.

He rose from the grave, and was seen all around;

Ever since, He’s inspired devotion,

And we’ll be with Him for eternity,

When we get our heavenly promotion.

That’s why Easter is a major event:

He suffered and died in our place.

He rose and forgave us and loves us still,

Our Savior of matchless grace.

By Joanna Fuchs

Day 8 Universal Studios

Terminator 3D was totally rockin'. Just look at Calob. Yes that sign does say it's for sale. If you have 6 grand you too can own your very own Terminator Statue.

My guys got more than a little flirty with some lovely ladies.


Calob learned how strong he was and won 2 prizes.

There was an awful lot of guys and cars picture taking going on.

Seen Scooby, Shaggy and some other cool peeps do their thing.

My Fellas were hanging out with the wrong crowd and got arrested.

For speeding in a 30 MPH zone.

Woody and Winnie Woodpecker came to the Rescue.

We then stopped and ate a bite.

Jacob insisted on taking pictures of the hubs and I. Too bad that sun was in my eyes.

The boys were getting pretty run down.

But they still had enough go in them to ride...

While they were enjoying scarab beetles I was busy practicing my Pimp Hat modeling skills.

Once again an AWESOME day!

FIRE!

Yesterday afternoon one of my dearest friends K picked Calob up from School so that he could spend the night with his best buddy C.

They were going to play the Wii, be boys, have a good time and then today they were going to a Birthday Party. I spoke to K yesterday evening and she told me that Calob would be home late Saturday afternoon.

Well imagine my surprise when Calob was knocking on my bedroom window at 7 this morning.

Soot all over his face, singed hair was upon his head, blisters on his ear, burn mark on his arm as well as flash burn to his hand and blisters on the bottom of his feet.

There was a fire that started in C's room. He got up and went to get his parents. Calob was still asleep in that same room. When K got there to wake him up she couldn't get in the room due to the fire and the inability to see where he was without her glasses.

So she kept hollering. Calob! Calob! Calob! You have to get up and come to me.

He woke up and the whole room was on fire even the carpet was melting.

My son had to run through the fire in order to get out.

It could have been so much worse. I am thankful for my friends. I am proud of my son for being the brave little guy he is.

Here he sits next to me in a cover after his shower, scared and afraid. He still smells like the fire. He's worried about his best buddy cause he lost his pet sugar glider in the fire. He's worried about C's little sister's and them not having anything. So much for one little guy to have to bare.

They lost everything in the fire. All they have are the pajamas they were wearing. They do have insurance but it will be sometime before they get everything back to the way it once was.

We're just thankful that everyone is ok. Please lift this wonderful family up in your prayers.

They are very special to us. We love them dearly.

Day 7 Magic Kingdom

Another GORGEOUS day.

Hanging out with Goofy made for good a good picture.

We had even more yummy Chocolate Mickey Heads.

Celebrations Parade was awesome. Just FYI these next set of pictures were taken by the youngest Calob. We may be onto something here folks.

Best picture of the day also taken by Calob is...

Another picture with a Monkey. Ok so technically a Baboon.

More Pictures while waiting in line.

Thunder Mountain... boys favorite ride up to this point.

Another day. Good times ya'll, good times.