Vinenzia, Firenze, Mykenos...Oh My! and scan update too."

We had a glitch in the blog site and are now back up and running. Lots to update....Here is her last update from Europe.

I'm still dreaming and smiling about the absolutely amazing cruise through the Mediterranean, it truly was the trip of a lifetime and I enjoyed every moment. When friends ask me which city was my favorite, all I can think to answer is "yes".

Each port brought it's own delights and uniqueness....Barcelona with it's stunning Gaudi architecture, especially La Sagrada Familia (the church) and the Avenue Las Ramblas with the colorful open air market, street artists, restaurants and shops. Florence with the Duomo and beautiful churches, the Ponte Vecchio and art museums that take your breath away. Naples, the rough little sea town with the Pompeii ruins, Monaco - we could at least see the outside of the Monte Carlo casino, seems shorts and sandals were not exactly "dress code" :) Makes me want to see "To Catch A Thief" again since so many spots in Monaco were recognizable from the film all those years ago. And the private yachts - oh my gosh, I didn't think they could be that huge! For sheer beauty, I think I enjoyed Mykenos the most. The backdrop of blue green Mediterranean waters against the whitewashed houses with their blue roofs and doors, the ancient windmills with the gorgeous blue sky behind them and a warm Mediterranean breeze tickling the little pin feathers on my head. Breathtaking. Athens....to be standing on the Acropolis, looking out over the valley surrounding it, all the amazing architecture....so many times I would have to almost pinch myself (in each port) because I could hardly believe I was actually there. Not looking at postcards or travel guides or watching travel shows. Truly walking on the same roads as many had gone so many thousands of years before. Every time we'd get to a new city, I'd turn to my brother and say "Guess what!", he'd be the good brother and reply "What?" (always knowing what was coming) and I'd grin from ear to ear and say "I'm in Barcelona or Mykenos or Venice" (wherever we were).

Istanbul with the Sultan's Palace and San Sofia church, the Blue Mosque, remnants of the ancient Hippodrome....Ephesus, the city where early Christianity was first established. I cried a little to know I was walking on the same dusty paths as Jesus, Mary and John, very deeply moved by that experience. Venice.....what an amazing city with it's waterways and gondolas, water taxis and St. Mark's Basilica, the Rialto and the Bridge of Sighs. Loved it!

The weather was great while we were there, quite hot but not intolerable. The only two places that were real scorchers were Ephesus (110 degrees) and Athens (about 106 degrees). Most of the rest of the places averaged mid 90s for temperature and that wasn't bad. Made sure I had 70 sunblock on my head and a good sun hat!

There were so many experiences - the sights, sounds, smells, food, colors, people, culture, language - it would take me pages to tell you all the incredible things I enjoyed. I tried to sample a little of the local cuisine no matter where we were and had a few rather interesting "tastes" but didn't miss many meals, that's for sure!

And this doesn't even cover the very cool experience of being on a luxury cruise ship! I was sure spoiled when I got home....very nice to have a pleasant cabin steward making up your room in the morning, turning down the sheets at night and always making sure there are fresh towels in the bathroom. And the food on a cruise ship.....well, let's just say "expanding your horizons" while traveling doesn't always mean seeing new places. :)

It was a great trip and I hope you can tell from what I've written here how much I enjoyed myself. Being with my brother and sister-in-law, niece and nephew plus many of Judith's (my sister-in-law) family members made this an adventure almost beyond description. The pictures on the blog are of me in Venice and with my nephew, Michael, before one of the formal dinners on the ship. If you have access to Facebook, my brother and niece have posted quite a few photo albums from our trip and you can see them from my page.

We're back in the "real world" now and the scan results are in. Discouragingly, the news was not good yet again. Seems the Abraxane and Carboplatin weren't working and the spots on the liver (that were there before) are larger plus there are a few new ones. No change in the nodule in the pancreas itself, however; the lymph node around it is bigger. The only piece of good news, I guess, is the lung tumor appears to have stabilized - it's not smaller but it's also not bigger and there appears to be no change at all. Would love to see it up and disappear, but for now, will take no changes as a good thing.

This is really disappointing news on two levels - first, obviously, it means we have to try yet another combination of chemo agents to try and stem the progression in the liver. I started this new chemo last Thursday - the name of the three drugs is quite lengthy and I don't remember exactly what they are, but they are referred to as "GTX" (sounds like a motor oil, doesn't it?). I'm back to weekly chemo, with two weeks on and one week off and we'll do another scan after two full cycles, 6 weeks from now.

The other issue is the continued progression of the cancer in the liver. So far, liver function has not been affected by the cancer (praise God for that!) but a major concern is that it will begin to cause problems (in the liver). Since the liver metabolizes all the chemicals going through the body, if it is affected by the cancer it could mean I can't continue to have chemo because my body won't be able to handle it. Now we aren't there yet and so far, my liver is ok but it is something to watch carefully. And truthfully, there are only so many bunnies in the hat for chemo combinations to try and, though we're not out of options, this is the 4th combination we've tried. As Dr. Karamlou said, this is a very aggressive cancer and it hasn't been responsive to treatment. Let's continue to pray this one does the trick.

Not easy news to hear and very sobering to realize options may becoming increasingly limited. I've shed my tears and continue to say my prayers for healing and still, no matter what, trust God and His plan for me. This journey on earth may be shorter than I'd like, but we aren't done yet and I continue to fight this disease with everything He has given me. Truthfully, the hardest part for me is having to make the phone calls to my family and friends to share more "suck" news (as I not so affectionately refer to it). I've come to terms with the cancer and what it may mean for me as it progresses but it never gets any easier to hear the anguish in the voices and see the fear in the eyes of the people I love so dearly. It's that pain I would dearly love to be able to take away, not my own.

And thankfully, I still feel good and have decent energy. I was so thrilled to be able to keep up on the Europe trip, I moved quite slowly at times but, by golly, with few exceptions made it to every single site and felt good. That's also what makes the conversations with Dr. Karamlou so bizarre - to look at me (other than being chemo bald) there are no outward indications I'm at all sick and yet on paper, I am considered terminal and it's just a matter of time. I still believe God can and may heal this cancer and certainly that is my prayer, as I know you are praying for me too, but I can only take each day as it comes and enjoy it for the blessings it holds.

A few weeks of summer left before I go back to work on the 31st and I plan to make the most of them. My mom, sister and I are going to Ashland this week to attend the Shakespeare Festival and that should be lots of fun - we've never been before. I'm flying back to CT with my sister to spend a week with her and her family in Westport and that will be great too. Then a week at home to rest before the wonderful chaos and bedlam of a new school year begins! I'm excited to meet my new "crop" of 6th graders and am so looking forward to being back to work. I was at school yesterday to get a few things organized in my classroom and print shop requests done and it felt so darn good to be there.

I hope each of you are enjoying this lovely summer too and am sending many hugs and much love.

Thanks for your continued support, encouragement and prayers, they mean more than I can every say.

Susan

Bon Giorno from Venice!

Good morning, friends and family :)

We docked in Venice this morning and all the bells in the churches in St. Mark's Square were ringing as we sailed through. Awesome! We have to wait for the Italian health inspectors to approve the "medical condition" of the boat before we can disembark. I guess with all the H1N1 scares, they are being cautious. Everyone had to fill out a health form and will have their temp. scanned as we leave the boat.

I am doing great and having the time of my life on this trip. I return late Tuesday night and look forward to a day or two of rest.

Prayer needs: I have a scan on July 30th and will get the results when I see Dr. Karamlou on August 3rd and prayers are appreciated.

I plan to send pictures on the next blog update.

Love to all,

Susan

"Scan Results - The Cancer is Trying to Kick Back"

Wow, seems like I blinked and June is over. These past few weeks have gone so quickly and it's hard to believe tomorrow is July 1st. Summer weather has finally arrived and it's wonderful....sunny, warm days and the long summer nights we love so much here in the NW. It stays light until almost 10:00 pm and it's so beautiful. Definitely worth the soggy cold winter and spring months to enjoy this lovely summer season. A balmy evening, baseball game on the radio and a popsicle or two (my new favorite treat :)........ahhhhhh.

Scan results are in and, disappointingly, the news is not too good. There is fluid in the lower lobe of my right lung and the lymph node around the pancreas is slightly larger. Also, there are spots on the liver that weren't there 6 weeks ago - an indication the cancer is moving. Clearly, the Gemzar and Tarceva weren't working and Dr. Karamlou took me off them immediately and has started a new chemo protocol of Abraxane and Carboplatin. Both are very potent chemo agents (more "big guns") and I will lose my hair again with this round. Darn, I was really getting to like my short little summer "do", but at least with the warmer weather, my head won't get cold as much.

I had my first IV treatment with the new drugs on June 19th and will have chemo once every three weeks. The next treatment is July 10th and then we'll do another scan at the end of July to monitor progress. Needless to say, I was discouraged with the latest news since I look and feel so good. It's just plain bizarre to be talking with the doctor about how sick I really am and yet have no physical indications of the disease at all. It is truly a gift God is giving me, to be so protected from the symptoms of this cancer and I am grateful for every day that I feel good.

Dr. Karamlou was encouraging on a few things....there have been good responses to this chemo protocol and, with cancer, it is not unusual to have to try a variety of chemo combinations to find the drugs that will work. Since I had such a good response on the first round, perhaps another "platin" will do the trick. He also said I am in good physical condition and very healthy (well, except for this little old cancer thing) to take on this chemo protocol. Sometimes people are too sick to handle it, but my body is strong and able to do this. Another blessing God has given me.

The side effects from this chemo protocol are definitely more evident than the first two rounds. A little nausea (good meds for that) and neuropathy (tingling and tenderness) in my feet but that hasn't been too bad. The biggest surprise was the fatigue, much worse than anything I've experienced before. Truly debilitating - the few days after the chemo were spent sleeping a majority of the time and it was a huge effort to even get up and walk across the room. That took me by surprise as I had been tired before but not flat out like I was this time. Thankfully, each day has been progressively better in terms of getting my mojo back and I can honestly say my energy levels are pretty much back to normal now.

The battle continues and I am up for the fight. Like everyone else, I really wanted to hear something different and there have been tears and swallowing hard more than a few times as I absorb this news. But as I've said before, I am fighting this disease with everything God is giving me to do so and more importantly, He is in charge and I still trust His plan for me.

I'm not one to sit around waiting for things to happen and these past few weeks are no exception. Had a wonderful time in California for my niece's graduation from college and the family celebration for her and my nephew, Michael's, graduation from high school.

Came home from CA to finish the last week of school with the kids and it was the usual end of the year bedlam. No matter how well it's planned out, the last few days are always chaos and this year was no exception. Although crazy, it was a fun week and I was so glad to be able to end the school year with the kiddos. They are my medicine!

Went up to Coeur D'Alene to watch my sister-in-law compete in (and finish!) the Ironman Triathlon. Kathy did great, finishing in 14:00:19. It is such a grueling event, I can't imagine why anyone would want to put themselves through all that but we sure are proud of her. My idea of a competitive event these days is navigating the hallways during passing times, getting from one side of the cafeteria to the other without hearing "Miss McCormick!" 50 times and herding children to the buses at the end of the day. Ever try to push a string across the floor with your foot? Eventually you get there but the energy it takes...well, you get the idea :)

Matt, Kathy and my nieces, Maddie and Mallory, came to Portland a few days after the CDA event and stayed with me. We had a great time and the house was just too darn quiet when they went home on Monday.

The next big adventure, of course, is the cruise through the Mediterranean. I leave for Barcelona on July 12th and return home on July 28th after traveling to Italy, Greece, Monte Carlo and Turkey. Am I over the moon about this trip? Oh my gosh, yes. It will be an amazing time there. I'm going with my brother Mike and his family, but my ticket is a gift from my whole family. I am so excited I can hardly stand it and I have promised not to try and stalk George Clooney while in Italy :) I've never been on a cruise ship before and that in itself will be beyond cool! I will take lots of pictures and share the stories that go with them.

Even though the scan results weren't what we wanted, life is good and I am enjoying every moment. The days are filled with all sorts of pleasures, from time with family and friends to savoring lime popsicles in the evening. Circumstances may change, but my joy is still in the strength of the Lord and this wonderful life He has given me to enjoy so abundantly. I hope your summer days and evenings are just as delightful as mine are.

Love and hugs to all of you,

Susan

"I'll take side effects and symptoms for $100, Alex"

And thankfully, I really have neither. There's been a few interesting physical things here and there and I'm quick to consult my "go-to" cancer guide for answers, but really nothing that has been of a concern. I feel good, have decent energy and no complaints. Chemo fatigue is really the only significant side effect I'm experiencing and I've discovered the beauty of naps. I heartily endorse them! :)

I have to be careful not to overdo, especially on the weekends because I don't bounce back, energy wise, like I used to but my body does a good job of telling me when it is time to rest. Listening to the signals has been a learning process and for an energizer bunny personality like mine, sometimes difficult to balance. I've learned my lesson in letting myself get overly tired though!Now having said that, I've had a wonderful time these last few weeks teaching and being with the kids and enjoying different adventures on the weekends.

A couple of weeks ago I went flying with my friend, Martin, the helicopter pilot, and it was just great. The picture is of us in front of the R44 - we had a terrific time. I love the sensation of flying in helicopters and it was a beautiful day to be in the air. Better than a roller coaster!

Last Saturday I went with a friend up to Seattle to watch the Mariners play the Twins. There is no bad day at a ballpark! The Mariners pulled off a victory late in the 8th inning and it was a fun day. Had my hot dog and I was a happy girl.This weekend I head to California to be the very proud aunt watching her niece graduate from college and celebrate like crazy with the family. My nephew graduates from high school this week as well so there is much to celebrate. Just being with my family is a joy in itself and I am looking forward to being with them.

Hard to believe my school year comes to an end next week, Thursday, June 18th. It's been quite the year, but a really good one and I'll miss this group of kiddos.The next contrast CT scan is scheduled for Wednesday, June 17th and I'll get the results when I see Dr. Karamlou on the 19th. I'll have scans approximately 6 weeks apart as we continue to monitor progress. Feeling as good as I do, I am hopeful the scan results will be as positive, or even more so, than last time.

Please keep praying along with me for a clean scan. God has been so good, allowing me to feel well and enjoy these wonderful days, and I know He is listening to the prayers.

Hugs to all,

Susan

"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