I can't sleep because I am too itchy!!

[Guest guest]

I can't sleep because I am too itchy!! So I find my self here in the

middle of the night because I must do something or go crazy.Tonight

I attended a 6th and 7th grade band concert. My daughter plays the

flute and did wonderfully. But for me tonight was the first time I have

been to a public event where I ran into people from work. It was

strange and sad. The conversation would start with "How are

you doing?" My answer today was, "Today was a good day." What surprised

me were the comments that came next. The first was "My mother is a

Cancer Survivor, she had breast cancer." my response was, "You are

going to make me cry." and immediately tears formed in the other mans

eyes. This monster had visited his family and the pain was still fresh.Then

the next co-worker I ran into asked about me and then said, "We lost my

dad to cancer two months ago." And tears came to his eyes.Another

co-worker told me today that his mother had decided to stop her cancer

treatment because the side effects were just too hard on her.The

25 days of radiation are some of the blackest moments in my life. But

tonight I am beginning to discover how many people are impacted by

cancer. If you survive or die cancer and cancer treatment is a mean

beast. I am not sure why I am writing this except to say that I feel

less alone after the conversations this evening. Nearly every family

has a story involving cancer.2007 has been a difficult year. There was an exciting start with my first picture book Un-Brella coming out in April. Big plans were made. Then came May. May brought

the news that 13 years of living with PSC had resulted in

Cholangiocarcinoma. June-November was filled with radiation, chemo,

exploratory surgery, a benign thyroid tumor and every medical test

imaginable.Now we wait for a liver transplant. And wait. And

wait. My Meld score is 25 and will be elevated to 28 the end of

December. I am on oral chemo to contain the cancer during the wait. If

anyone out there feels alone in their health challenges tonight I want

you to know that you aren't alone and I said a prayer for you tonight.

We all need each other. More than we know.

[Guest guest]

Thank you for your prayers . I add my prayers to yours for all with health challenges.

Ian (51) PSC 89

I can't sleep because I am too itchy!! So I find my self here in the middle of the night because I must do something or go crazy.Tonight I attended a 6th and 7th grade band concert. My daughter plays the flute and did wonderfully. But for me tonight was the first time I have been to a public event where I ran into people from work. It was strange and sad. The conversation would start with " How are you doing? " My answer today was, " Today was a good day. " What surprised me were the comments that came next. The first was " My mother is a Cancer Survivor, she had breast cancer. " my response was, " You are going to make me cry. " and immediately tears formed in the other mans eyes. This monster had visited his family and the pain was still fresh.

Then the next co-worker I ran into asked about me and then said, " We lost my dad to cancer two months ago. " And tears came to his eyes.Another co-worker told me today that his mother had decided to stop her cancer treatment because the side effects were just too hard on her.

The 25 days of radiation are some of the blackest moments in my life. But tonight I am beginning to discover how many people are impacted by cancer. If you survive or die cancer and cancer treatment is a mean beast. I am not sure why I am writing this except to say that I feel less alone after the conversations this evening. Nearly every family has a story involving cancer.

2007 has been a difficult year. There was an exciting start with my first picture book Un-Brella

coming out in April. Big plans were made. Then came May. May brought the news that 13 years of living with PSC had resulted in Cholangiocarcinoma. June-November was filled with radiation, chemo, exploratory surgery, a benign thyroid tumor and every medical test imaginable.

Now we wait for a liver transplant. And wait. And wait. My Meld score is 25 and will be elevated to 28 the end of December. I am on oral chemo to contain the cancer during the wait. If anyone out there feels alone in their health challenges tonight I want you to know that you aren't alone and I said a prayer for you tonight. We all need each other. More than we know. -- Ian Cribb P.Eng.

[Guest guest]

Wishing you well with your wait.

I think it's your story and others that made it so poignant for me.

You're right, we all have our cancer stories. My mom had breast cancer

twice. After the first episode, she had a lumpectomy but the second

resulted in a radical mastectomy. Two weeks later she had a stroke.

Although the docs like to say the stroke was unrelated (hers was a

blockage), they'd only given her heparin for a few days and sent her

home. Hmmm ... surgery, likelihood of clotting, possibly insufficient

heparin, stroke ... you do the math.

Anyway, while there are still lasting effects from the stroke, she's

doing better and that's what matters most.

[Guest guest]

,

As you know, we have had many sad and tragic stories here at PSC Support but we

have also had heroic positive stories here too from people who have gone through

what you are. I hope you can gain strength from the positive and dwell on the

sad only a little. Looking at your picture book certainly makes me believe that

you find your glass half full. I will open my un-brella of strong positive

prayer and thoughts so you can play, swim, skate and slide once more.

Tarheel Tim

[Guest guest]

-----Original

Message-----

The 25 days of radiation are some of the blackest moments in my

life. >>>> 2007 has

been a difficult year.

,

Won’t bore you

with my family’s cancer history; let’s just say I know what I am

going to die from.

2007 has been a

difficult year for us too. But we’re

still here and funny as it may sound I’m starting to believe the old

saying; “What doesn’t kill us makes us stronger”. When you’re in the throws of pain

and misery, (no matter what the cause) it’s easy to overlook the triumphs,

the little day to day successes, but when you do, when the time is right for

you, you’ll see there were many of them. I can’t tell you to focus only on

those good things, because sometimes that’s just not possible. It’s all too fresh, too painful, but

with time, it’s what you will do, it’s the human spirit in us and

what makes us all so special. And

the amazing part is (at least for us) you’ll feel somewhat grateful for

that pain, because without it, you might have taken so much for granted. You’re still here, with a family

that loves you, every day is special, pity those poor people who will never really

know that feeling.

Love the book,

Barb in Texas - Together in the Fight, Whatever it Takes!

Son Ken (33) UC 91 - PSC 99 - Tx 6/21 & 6/30/07 @ Baylor in Dallas

[Guest guest]

>And the amazing part is (at least for us) you'll feel somewhat

> grateful for that pain, because without it, you might have taken so

much

> for granted.

Barb, you are so right. There are times I have said, " just look at

so and so, have they ever went through what I've been through? " and

felt jealous of them, but you made me realize that instead I should

be grateful that 's illnesses and his mother's death in the

middle of it all, have made me that more greatful to have our

daughter Lily. I am always telling people that she was born just at

the right time, any later and she wouldn't have been possible. She

has helped our entire family deal with everything.

Also, my brother had leukemia 7 years ago. He says it was the best

thing that ever happened to him because of the changes he made in his

life afterwards. Would he have said that 7 years ago while he was

going through it? Absolutely not!

wife of

UC & PSC 2000 J pouch 2004 Tx 11-18-06

[Guest guest]

,

I loved the book!!! And I'm reading the blog often, so I feel like I'm walking with you in your path. I'm wishing you and your family all the best! You and your wife are both really good writers.

And yes, there's a ton of cancer in my family. I've already had it, and then again almost had it. I'm on prednisone, which increases cancer risk, and my CA-19-9 & Alphafetoprotein are both elevated. I'll be scheduling an ERCP test in January. I guess none of us are alone when it comes to cancer. But it is a beast & monster.

-MarieYou keep typing, we keep giving. Download Messenger and join the i’m Initiative now. Join in!