"What Can Make A Hippopotamus Smile"

What can make him walk for more than a mile.....one of the many camp songs that is still bouncing around in my head after Outdoor School with the kids last week. As you can see from the pictures, we had gorgeous weather - probably the best ever in 10 years of going to Outdoor School . We went to Camp Trickle Creek, a great site nestled in the foothills west of Salem , and it was so much fun. Campfire each night, goofy camp songs and skits, eating together in the dining hall, a night hike, not to mention the actual "school" part of Outdoor School, field studies in plants, animals, soil and water. There's nothing like watching kids experience the outdoors in a new and different way - to see them get so excited over catching (and releasing) a newt or watching the bats in the night sky or playing games where they get to be different stages of the forest. It's so much fun! I was tickled to have two high school counselors there that had been my students many years ago - one of the pictures is me and "Poppy", she was in my 6th grade class six years ago. The other two pictures are one of my classes as we were "hanging out" late in the afternoon and a nice shot of the camp.

I was so grateful to be a part of the Outdoor School experience this year. It's a lot of energy and can be exhausting even on a good day and I wasn't sure how I'd hold up. Praise God, I felt just fine. I do tire more easily, a side effect of the chemo, and couldn't do the long hike or running games, but was able to be a part of everything else. My colleagues took good care of me too, making sure I didn't overdo and covering whenever needed. And I must say, we did one very funny skit at campfire that is still making me laugh! I am very blessed. :)

There are times the reality of this cancer rears it's ugly head and, sometimes, just the sheer joy of watching the kids having fun and being a part of the beautiful surroundings made me cry. The tears were mixed, joy at watching the kids and sadness with the realization that, quite possibly, this could be my last outdoor school experience. Not a morbid thought, but as I say, there are times I am reminded of my mortality in this whole cancer thing.

This doesn't, for one minute, take away from my intent to be fully healed, and perhaps there is no easy way to explain this, but I'll try. Cancer is now a permanent part of my world. It isn't always a conscious thought and, truthfully, often it isn't on the conscious level at all - that is a huge praise that I still feel good, have energy and no symptoms or significant side effects. But it is there and will be, until I am fully healed. There are moments when the reality of the cancer surfaces and there are practical matters that have to be dealt with such as advance directives for the hospital, a will, stuff like that. It's things that all of us have done or will do at some point in our lives. Mine just happens to be a little more pressing at the moment. And there are moments of deep sadness - realizing that I may not be able to dance at my niece's and nephew's weddings or hold their babies or get all seven continent stamps in my passport or be that brazen old lady dancing the Argentine tango in a scandalous dress slit to....use your imagination. ;) I may not have that kind of time. Only God knows that and I trust Him and His plan for me.

For now, for today, I feel great. It's a gorgeous sunny Memorial Day and I'm heading over to my cousin's house to enjoy time with family and a bbq. I've got some wonderful summer plans that are coming together nicely and I can hardly wait to pack my bags and travel a bit. My dog, Corbett, is doing just fine and continues to be the diva of the household. Tomorrow I go back to work to a job I love and I am deeply grateful to have a job next year - budget cuts in our district have eliminated a lot of teaching positions and friends of mine have lost their jobs for next year. My favorite ice cream flavor, Baseball Nut, has returned to Baskin-Robbins for the season - yum! The baseball game is on the radio and, unfortunately, the Mariners are losing to the A's, but the game isn't over yet! Life is really good and I'm enjoying each and every day.

This is my wish for you, too. Reach out, grab the day with both hands and enjoy every moment!

Love and hugs to all,

Susan

Scan Results are Encouraging

Praises to God for answered prayers! I met with Dr. Karamlou yesterday and the news of the scan results were good. The tumor in the lung and the lymph node has shrunk to a size slightly larger than a quarter. Considering it was about the size of my loosely clenched fist when we first started, this is great news! No changes in the pancreas or surrounding nodes and this is good news too. There isn't an expectation of much shrinkage of these tumors and the hope is to stem any progression so no changes is a good thing. I continue with the Tarceva and Gemsar chemo treatments and another scan will be done in about 6 weeks. It was great to get some good news and thanks to God for His mercies and listening to all the prayers.

Chemo went well yesterday - had to switch veins midstream but, thankfully, it wasn't too painful and I felt fine when done. I'm still feeling good, no symptoms or significant side effects and decent energy. My hair is starting to grow in at a more rapid pace and is still white with a dark patch here and there (I guess I'm the 102nd Dalmation :). It's showing signs of curl here and there as well. I must admit, I've gotten used to the semi-baldness and the ease in washing my head in the morning. Buff dry and done! I'm only half kidding when I tell people I might just keep it this way for awhile. Saves a bundle on hair care, that's for sure, and I always have "Marge" when hair is absolutely necessary :)

Today is a gorgeous sunny Portland spring day and I'm going to go enjoy the sunshine when I'm done here. Hope all of you have a great weekend. I know I plan to!

Love and hugs to all, and so many heartfelt thanks for your care and prayers. God is listening!

Susan

"Radon, lung cancer and me"

The scan on the 30th went fine, it's an easy process and now we wait for results. I see Dr. Karamlou on Thursday, May 7th before chemo and we'll go over all the reports then. In these last months, I've learned that the doctor calling right away after tests are done usually means the news isn't good so I'm happy to bide my time until the 7th.

Many times in this cancer journey I've wondered what the purpose is in all this and what can be done to glorify God in each step. He has brought so many amazing people into my life throughout this process, people that have encouraged me and people that I have been able to encourage. I am so grateful for these opportunities.

There is one other very important mission I've been given and as each day goes by, more is revealed to me. Let me give you a little of the history behind my "Radon mission" first. In December, when I was at UCSF to see the oncologist there, she asked if I had ever had my home tested for radon. I told her no, I didn't even know what radon was and had never tested for it. Didn't think much of it until my oncologist here in Portland asked the same question...again, I answered no, but was thinking to myself "Why are the doctors asking me about this?". I didn't pursue the question and it wasn't until my dog, Corbett, was diagnosed with a form of cancer that this whole radon thing got my attention. A friend of mine is a chemical engineer and when he heard that both my dog and I had cancer, his first response was "Susan, you need to get your house tested. There's something there making you both sick."

The reasearch began. I learned that radon - an odorless, colorless, radioactive gas - is the number #1 cause of lung cancer in non-smokers, killing an average of 21,000 people annually. It is the second leading cause of lung cancer after smoking. Radon is caused by the decomposition of uranium in the soil and when inhaled over long periods of time, can cause cancer. It doesn't matter what type of home you have or when it was built, it all has to do with the dirt it sits on.

The research continued.....according to Oregon EPA, I live in an area known as "Radon Ridge" with some of the highest levels of radon in the Portland Metro area. This was news to me! The next step was to test my home and without going into all the particulars, just know that anything measuring above 4 PiCu is considered toxic. My home tested at 20.4, five times the toxic level. Do the math, folks, - 13 years in this house with high levels of radon gives me a pretty clear understanding as to why I have lung cancer.

I guess you could say this rocked my world (no pun intended). Several things happened at that point. First, immediate plans were made to install a radon mitigation system to properly vent this toxic stuff out into the air. Done. Next step was to continue my research and talk to others. I thought it was just me....how come I didn't know anything about this radon stuff? Turns out very few do. Many would tell me they'd heard of it, but didn't know what it was or why it was an issue. The #1 cause of lung cancer in non-smokers and no one knows about it? How does that happen? Virtually none of my neighbors, friends, colleagues knew about it - friends on my block tested their home shortly after my report came in and their home had a level of 46, over 10 times the toxic level.

More research.....I find that some states have legislation in place requiring radon awareness/notification in real estate transactions. Oregon is not one of them. According to the Federal EPA, all homes should be tested for radon yet it is a subject few know about. So I decided to do something about it. I contacted a columnist for our state newspaper, the Oregonian, asking if she'd be willing to write an article about radon awareness, as I want to be the "living face" of radon related cancer for as long as I can. It is really important to me to get the word out, have people test their homes and if necessary, mitigate any radon exposure as soon as possible. Turns out she was interested and an article was published in the paper two weeks ago. Here's the link if you'd like to read it: www.oregonlive.com/news/oregonian/margie_boule/index.ssf?/base/living/1239839713325720.xml&coll=7

Things have really taken off from there. I've been asked to testify before the Oregon House for HB20, a bill that will require all new home construction to have radon detection systems and may also do some promotional work for the local American Lung Association chapter in their Radon Awareness group (up till now, I didn't even know such a thing existed!). I've also been in touch with a woman in Illinois whose husband died 18 years ago from radon related lung cancer - she became part of an organization that was subsequently successful in getting legislation passed in Illinois requiring Radon notification in real estate transactions. Her group has already done the legwork I want to do to get this same requirement in Oregon . I have lots of plans for getting the word out to everyone I can think of about radon awareness!

So at least a part of this cancer journey is my "Radon mission", to help inform others and prevent anyone else from getting lung cancer as a result of exposure. I've been asked if I'm angry or bitter about the fact that I probably have a cancer that could've been prevented if I'd tested my house years ago. And honestly, no, I'm not either of those things. I didn't know anything about radon - now having cancer is just what is and I do believe there is a purpose in it. What I ask of each of you is to take the next step, no matter where you live or how old your home is, and test your house. The test kits can be purchased at Home Depot or any similar store and cost about $10.00, plus an additional $30.00 for lab processing. $40.00 isn't a huge sum when you consider the alternatives. Do it for me, ok? It will make me glad to know the people I care about and anyone else that happens to read this are taking steps to protect themselves and their families and pets.

Skeptical? That's fair. Do your own research and read up on the subject, it's weirdly interesting. But most importantly, please do something. You're all too important to me to let this sit on the back burner.

OK, 'nuff said and I'll hop off the soapbox. Keep praying for good news when I see Dr. Karamlou on Thursday!

Love and hugs,
Susan

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