Sundays with Susan: Psalm 139 says it all

Hey Big Sis!
Last Sunday in Church, we discussed Psalm 139: 1-4. It really touched me and I immediately thought of you. Psalm 139: 1-4 says:

1 O LORD, you have searched me and you know me.
2 You know when I sit and when I rise; you perceive my thoughts from afar.
3 You discern my going out and my lying down; you are familiar with all my ways.
4 Before a word is on my tongue you know it completely, O LORD.

God knows everything about us. He makes His work “plain” to us. He often acts in ways we may not see at first. I truly believe God speaks to you through the children you teach. They make you so happy! They sure are lucky to have such an amazing teacher! Dad showed me the newspaper article that you were in. I saw the whiteboard in the background with all the words of encouragement the children have written to you. What wonderful children! You are an inspiration to everyone.

You are such a strong person Sue, and your faith in God amazes me. You put everything in His hands and you know that the Lord is with you. I heard this song the other day and I wanted to share it with you. I’m not sure if you have heard it before, but it was written for the Lance Armstrong Foundation. The song is called Maybe Tonight, Maybe Tomorrow and the lyrics are:

I heard the news today. It came out of nowhere.

I wish I could run away,

but where would I go?

Is this my destiny? Something so unfair... What will become of me?

God only knows.

And they say the road to heaven might lead us back through hell.

Maybe tonight, maybe tomorrow, we will win this fight and bury this sorrow.

We're so alive, still holding on, not ready to die, so we LIVESTRONG.

My pride is left for dead, as my world gets shaken.

The thoughts inside my head are so hard to control.

I am staring down the unknown, but one thing is certain.

You could break my body, but you will never break my soul.

And they say the road to heaven might leads us back through hell, but we're holding on for more than stories to tell.

Maybe tonight, maybe tomorrow, we will win this fight and bury this sorrow.We're so alive, still holding on, not ready to die, so we LIVESTRONG.

Love you,

Tara

I also attached the link if you would like to listen to the song and read the lyrics.

April 30th is the next big test day

It's a beautiful spring afternoon and we're finally getting some lovely sunny days and slightly warmer temperatures. Everything is so green and flowers and trees are blooming like crazy. I love it!

My chemo treatments are going well and I am still feeling really good, no symptoms or significant side effects to speak of. The horrible rash on my face is almost gone - Dr. Karamlou said it would diminish with occasional slight flare ups from time to time. He was pleased with the quick onset and severity of the rash, actually. He says that the earlier the rash appears and the more severe it is seems to correlate with the best response to the Tarceva. If that's true, then it must be doing good things in my body!

The next test is on April 30th when we do a complete scan of the chest, abdomen and pelvic area to check the progress for both the lung and pancreas. This is the first "official" scan of the lung after the chemo-rads and also to see how the pancreas is doing after two rounds of Gemsar. I'll get the results when I see Dr. Karamlou on May 7th.

Please pray with me for good results. The initial scan of the lung showed almost a 70% reduction and I'm confident the results will be even better after another month of the chemo-rads doing their work. Obviously, the pancreas is the big concern and I am praying to see significant healing in this area. As Matt has said in a previous update, please pray hard, pray sincerely and pray focused. Thank you so much.

It's been a busy time, back in the classroom and all that goes with that, but I sure enjoy the time there. Two dear friends were here to visit me this last weekend and we had such a good time, laughing and talking, enjoying the beautiful weather with enough snacks to feed half the block. It was great!

Tonight I'm going to the theater with mom and friends to see the stage production of "Grease". Should be a lot of fun and I will try to only hum quietly under my breath as I know all the songs. I think I saw the movie 5 times?! Oh come one, who didn't? :)

Sending all of you much love and many hugs, enjoy your days!

Susan

Happy Easter

It's a quiet Saturday morning and I'm enjoying the peacefulness of the moment, feeling rested and well and so thankful for that. It's Easter weekend, my favorite holiday, because of the amazing gift I've been given when Christ went to the cross. He is risen!

No coffee this morning though, as it still doesn't taste good to me and the chocolate bunnies and eggs are safe from my clutches too. It was suggested that my body could be rejecting the caffeine and that's entirely possible. Never dreamed there would be a day my two favorite food groups (coffee and chocolate) would no longer appeal!

I am feeling really good and that's such a gift. I've had two chemo treatments with the Gemzar, once a week on Thursdays, with no problems. The first time back in the oncology center was depressingly familiar and the nurses, though absolutely wonderful to be with, were sad that I had to be back for more chemo. Thankfully, the Gemzar treatments have gone well and IV access easy (praises for that!).

The other chemo agent, Tarceva, is a pill I take daily and this is to continue work on the lung tumor. Dr. Karamlou told me there would be a side effect to this one - a nasty, painful rash all over my face - but this is a good sign, means the chemo is working in my body. Well, you know me, nothing is done halfway, and when he said a rash all over my face, I met every expectation there! About four days after I started taking it....kapow! It looks like a combination of rosacea and very bad acne, but the worst part is that it hurts a lot and itches like crazy at the same time. I have a topical ointment that helps a little bit, I just have to keep reminding myself that this is a good thing, the chemo is working. My kiddos are so sweet - when I told them why I had such a bad rash on my face, that the chemo was doing it's job, one group cheered and said they were so happy it was helping. Almost made me cry...they are so good at taking things in stride and accepting of circumstances. I learn from them every day!

I meet with Dr, Karamlou again on the 16th and should have information then as to when we're going to scan the lung for a final update on results of the Cisplatin and radiation. The initial scan (PET scan) had shown a roughly 70% reduction and I'm optimistic there has been even more improvement there. Also, I want to know how often we scan the pancreas to check progress with the Gemzar.

The best thing for me is being back to work. I finished my second week of being back on a part time basis and it has been the best medicine ever. The days are busy, the kiddos are so much fun and I come home tired, but a good, used my brain, happy kind of tired. I was concerned about my energy level, but no problems there. I feel energized in such a positive way when I'm teaching and at school and am so glad I made the decision to go back when I did.

Many people have been asking me about future plans, do I want to travel, do other things, etc. and sure, there are things I plan to do, but I also intend to be fully healed and have plenty of time to fulfill those dreams. The one thing that has remained constant for me is I am so grateful to be doing what I love so much. Teaching is my passion and I've had nine wonderful years of it. My response to those who ask me is to follow your own heart, do the thing you are passionate about whatever that might be because it is never work when you love what you do. Don't wait to pursue what you love the most - trust God to direct you because if you are doing what He has created you for, it is the most joyful, rewarding experience you can have.

And speaking of wonderful experiences, spring is sneaking in here in the northwest and we've had a taste of some warm, sunny days. Last Sunday was the trifecta - warm, sunny afternoon (I could even wear shorts!), planting flowers in my garden and listening to the opening day game for MLB! Perfect! The daffodils are blooming like crazy and everything is so green and beautiful.

Better than that, though, was being with my family, watching my beloved Giants play in their home park on Weds. night. I flew down to SF to not only see the game, but be there when Dad presented the Cy Young award to Tim Lincecum (the SF pitcher who won it in 2008). Quite a passing of the torch as Dad was the only other Giants pitcher to have won the Cy Young. It was great to be there at the game, enjoying the time with my family and eating a ball park hot dog! Coffee and chocolate might be gone, but fat, grease and salt are still just fine :)

I am so blessed to be feeling good, have energy and still be doing all the things I enjoy most. Each day brings something new and there are days that are not always easy - dealing with this rash hasn't been a whole lot of fun. I approach my days from the viewpoint that I am already healed and we're just waiting for the medical treatments to do their job - summer plans are being made and I'm already looking toward next year's school schedule and preparing for that. I'm even going to teach a few sessions of Driver's Ed. this summer, have to keep the adrenaline pumping :)

The outpouring of love and support continues to amaze and humble me. Thank you. It doesn't adequately express how deeply moved I am by the love and care I am receiving, but there are no easy words for that. Thank you, and love to you all.

Susan

Sundays with Susan

Aunt Sue,
I think it is hard to choose only a few words that come to mind when I think of you. You are inspirational in everything you do; your positive attitude and ability to always take things in stride with such a strong faith sets a great example for everyone. You are unbelievably caring and always think of how others might feel even before you think of yourself. You are incredibly intelligent and wise and always offer the best insight to and advice on a problem. You have one of the most charismatic personalities the earth has ever known; the room lights up when you walk in it and you have a remarkable ability to strike up a conversation with anyone about anything. You are so passionate and enthusiastic about everything you do, especially teaching. Any child is so lucky to have such an amazing teacher. You are so lively and always animated, especially when you are reminiscing about your childhood or trying to embarrass me J. You are also a quite talented baker, as I’m sure anyone who has tasted your cookies would agree. You have an amazing sense of humor that can bring a smile to anyone on the worst of days. Most importantly, your positivity and faith radiates to other people across miles. I think your blog has attested to what an incredible person you are and provided inspiration for many people. I am so lucky to have you as my Aunt Sue! I love you so much and cannot wait to see you Wednesday!
Love you!
Kelli

From Mikey:

Life is kind of like the ocean,

You can see how it starts, but not the way it ends.

So lets just take things as they come to us,

And be happy we're best friends.

Let us learn from each other,

We can help each other grow.

And let us always be there for one another,

At times we are feeling low.

May we always be able to put a smile on each other’s face,

And a twinkle in our eyes.

And let us never forget all the good times,

Like watching shooting stars fall from the skies.

The laughs just keep on coming,

Nothing can ever take that away.

Cause they start from the inside,

And get deeper every day.

They make us stronger,

As they bring us closer together.

They always make our days brighter,

No matter the weather.

Just the sound of that laugh,

And the sight of that smile.

Makes every risky minute,

Worth the while.

A moment where nothing else matters,

And a chance to be free.

All the rest fades away,

And it’s just you and me.

We can just walk together,

To that beautiful place.

Side by side,

With that look upon our face.

The look,

That says it all.

The one that reaches out,

And will never let us fall.

I see the truth in your eyes,

They're so honest and true.

They tell me everything.

You can't fool me,

Cause it’s not your story to tell.

Its straight from your heart,

And I know it so well.

Your heart is so honest,

Caring and pure.

The only thing that can never lie to you.

When your heart skips',I can feel it,

When it’s sad, mine is too.

And if it ever feels empty and alone,

Always know that I am here for you.

So best friends it is,

Now and forever.

That's the best feeling there is,

Nothing could be better

-Jess Mccaslin

Dear Aunt Sue(Salami)
When I saw this poem, it really stood out, I just remember all the good times that we have spent together and am glad that my Aunt could be the coolest of them all. Your laughter stands tall in a world so cruel and on the darkest days you shine like a lighthouse in the darkest nights. I look forward to all the memories that we will continue to share and admire the accomplishments that you have made in the hopes that I will be as awesome as you. Remember that you are always in our thoughts and I can’t wait until I see you next.

Love,

Mikey

Hi Sue

Just wanted to say how much Sue reminds me of my friends who fight AIDS with a mix of humor and dignity. It's not the desire to live. It's not the desire to fight. It's the living in the moment. It's the blue wig. Cancer marks us. For some, it feels like something to hide. For Sue, rather than hide, she advertises it head on. This cancer is not going to get her, it's not defining her: She is defining it. For those of us who have faced our own mortality head on, and deal with it every single day, it's not Sue's fight that inspires us. It's her joie de vivre, humor and life. Sue has been a friend of our family for many years, and I can only be thankful for her. Thank god for blue wigs. It was that (not so) simple gesture that reminded me that I have a responsiblity to help others with my own illness.

Scott Smithson

Sundays with Susan

Per Sister Stacy:

When I asked them tonight what comes to mind when they think of their beloved Auntie Sue, their words were endless! Meghan even composed a few poems!

Ryan (10 yrs. old)
funny
generous
cool postcards
helpful
awesome
cool
fun
really brave
amazing
she knows funny songs and jokes
"she believes in God all the way"

Meghan (8yrs.old)
teaches me poems
walks with me
taught me the "Salami Song"
loves me with all her heart
awesome
she's funny
she's cheerful
loves the Giants!
she rocks!
she has courage

Meghan asked "Can I move to Oregon when I'm in her grade and she can be my teacher?" and then she composed a couple of poems for her.

"Auntie Sue"
Oh Auntie Sue
What are they doing to you?
Are they putting knives in you?
Are they hurting you?
Oh Auntie Sue
What are they doing to you?

"Look"
Look
It is Auntie
Nicest bald head that's round
and cool
Swishy dresses
and
Hats

Believe
God believes
I believe
I want you to believe
So lets believe!

"The Tests Results Are In"

I must say, I wish there was better news to report regarding all the recent tests and it certainly is a mixed bag...the good news is the PET scan shows a significant reduction in the size of the lung tumor, almost 70% smaller, and that is a huge praise! The response to treatment (in the lung) has been very good and we'll hope for even better news when the final scans are done in a few weeks. No other "hot spots" were found anywhere else in the body and that's a praise of grateful thanks too.

The not so good news is the cancer in the pancreas has spread and is definitely in the lymph nodes around the pancreas. This means surgery is no longer an option to remove the nodules in the pancreas itself and chemo is the only treatment option. I've known from the beginning, when this was first diagnosed, that pancreatic cancer is very difficult to treat and without surgery, it's not a good prognosis. It seems the Cisplatin did an excellent job on the lung (as it's designed to do), but had no impact whatsoever on the pancreas. We'd hoped it would at least stem the progression, but that didn't happen. I'm now considered a Stage 4 for pancreatic cancer and we do what we can to slow it's spreading through the body.

I start chemo this Thursday - the chemo agent for the pancreas is Gemsar and it is supposed to work as well on the pancreatic cancer as Cisplatin did for the lung. That's good. The chemo is an IV treatment once a week - I go two weeks on (every Thursday) and then one week off and will be on this chemo for the rest of my life. I'll also continue a chemo protocol for the lung (Tarceva), but it's in pill form. Dr. Karamlou says the side effects of Gemsar won't be too bad, not even as bad as the side effects from Cisplatin. Since I didn't have any significant side effects from that, I'm hopeful this won't be too bad. He did say I won't get my hair back though....if that's the worst thing I have to deal with, I'm ok with that. Sure has made getting ready in the morning a breeze and I have a collection of some very cute hats.

Some have asked why we didn't combine Cisplatin and Gemsar from the beginning and fight both at the same time. This was a question I'd asked from the start - the reason is the two chemo agents are so powerful and potentially toxic that the combination would likely have been more than my body could handle. The fear was I would be unable to continue treatment due to the toxicity, meaning neither cancer could be treated, or worse, treatment induced mortality. We've known from the start that this is a very complex case, with two separate cancers, and so many decisions have been a bit of a gamble.

Surreal is the only word that adequately describes what we've all been feeling since getting the news. It is just bizarre to be talking about the implications of Stage 4 cancer and phrases like "treatment for the rest of your life" knowing that according to medical data, this is being measured in months or perhaps a year or two. It is especially surreal when I feel so good - I have no symptoms, no side effects, my energy level is better by the day and I'm back to eating normally with no complications.

As I've said before, I am not a number on a page, a statistic or medical data. God is my ultimate physician and I am grateful He has given me good, caring doctors and nurses and top notch medical procedures. I am still fighting this cancer with as much determination and vigor as before and still intend to be a cancer survivor!

Though this news has been hard with many tears shed, there are also so many happy, bright moments in the last weeks. Having my family here with me has been great - my sister, Stacy, was here this past week and we had so much fun together. It's the "rainbow" days of March (as my friend Becky describes them) - a combination of rain, sun, sometimes both together and lots of beautiful rainbows in between. I love the reminder of God's promise in the rainbows! The daffodils are coming into full bloom and I so enjoy the sunny yellow cheerfulness. My birthday was last week (18 years old with 34 years of experience - you do the math :) and my house is full of flowers, balloons and cards. A lovely celebration! And some very yummy cake too :)

Best of all, I'm going back to work on March 30th after spring break. I'll be working half-time, M-T-W, with chemo in Thursdays and the weekend to recover, if needed. I'm so excited to be back to teaching and being with the kiddos, they are my true medicine. "Marge", my blue wig, will be with me from time to time and since I might not have hair again, may need to venture out and add a few more to my collection. My brother, Mike, suggested Elvira or Lily Munster, I'm thinking maybe Pippi Longstocking with the braids. We'll see :)

Other plans? I don't know yet, I'm taking each day as it comes and enjoying it for the blessing it is. I'm so grateful for God's hedge of protection in feeling good and enjoying the blessings of each day. As He reminds me daily, "Be not afraid for I am with you" (Isaiah).

As Matt asked in a prior update, please keep praying hard and praying focused. This journey is far from over and I am grateful for all my wonderful friends and family that are right along side me every step of the way. Still too much to do for me to leave anytime soon!

Love and hugs to all of you,

Susan

Sundays with Susan

An interview with two of her nieces:





What words come to mind when you think of your Auntie Sue?


Mallory
Happy
Full of joy
Kind
Loving
Always there for you
Supports you
Full of laughter
Loves animals
Caring
Makes the right choices
Always bouncing around in joy
Sweet
My hero





Madison
Smart cookie
Funny
Interesting jokes
Great laugh
Embarrassing me in public :-)
Teacher
Bologna song
Carpet vs. ketchup
Comfy...Like to hug her
Lovable






That pretty much says it all through the eyes of a 9 & 14 yr old.

Love you Sue!