My New Slogan

This is one of those things that everyone on Facebook was posting.  I love it and had to share. 

Susan

Trying to Focus and Be Clear though trouble seems to swirl around me.

If God is for us, who can be against us? Who shall separate us from the love of Christ? Shall trouble or hardship or persecution or famine or nakedness or danger or sword? No, in all these things we are more than conquerors through him who loved us. For I am convinced that neither death nor life, neither angels nor demons, neither the present nor the future, nor any powers, neither height nor depth, nor anything else in all creation, will be able to separate us from the love of God that is in Christ Jesus our Lord. (Romans 8: 31b, 35, 37-39)

Do not worry about anything, but in everything by prayer and supplication with thanksgiving let your requests be made known to God. And the peace of God, which surpasses all understanding, will guard your hearts and your minds in Christ Jesus. Finally, beloved, whatever is true, whatever is honorable, whatever is pleasing, whatever is commendable, if there is any excellence and if there is anything worthy of praise, think about these things. (Philippians 4:6-8)

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I am feeling between a rock and a hard place.  I see my Doctor on Wednesday and we will decide whether or not to take me off the oral chemotherapy drug Xeloda and put me on IV chemotherapy.  I do not like either prospect.  The Xeloda has severely affected my stamina and my feeling of wellness.  It caused me pain, nausea, and exhaustion. 

A new chemotherapy regimen will bring new side effects and challenges.  I will lose my hair again.  I will have to sit for a couple of hours in the cancer center while they pump it in to me.  I am growing weary of all of this. 

I am taking delight in my spunky two year old son.  He gives me lots of kisses and hugs.  I am working with a woman to regain her life and her peace.  We are about to build her a new safe haven to go home to.  It uplifts my spirits to assist someone in great need.  I feel quiet.  I have not written as much but I am not beaten.  I am not even close to being beaten.

I am working to regain my strength and meditating on the verses that I included above.

In case you were wondering.

Susan

Tracey's Lesson

This is a piece I wrote perhaps 20 years ago but I remember it as if it were yesterday.  I thought I would dust it off and see how it works in 2011.  Hope you enjoy it.  

It was a beautiful Fall day. The kind here in Maine that are bittersweet with both a snap in the air that warns of the impending winter and a sunny sweetness all its own. Autumn is spectacular in New England; the air is crystal clear, the sky is a vivid palette of blue, and the pungent odor of burning leaves tickles the nose.

For me, in that Fall of 1975, it was also a busy time. lmitating the squirrels who were busy laying up winter stores of food, I was working to preserve the bounty at hand. lt had been a good harvest year; our vegetable garden had outdone itself, and now I was turning my attention to our huge apple tree in the back yard.

We were fortunate to live in an 1850's vintage cape in this beautiful Maine village. We loved this old unique home and its surrounding community, and we appreciated its rich heritage. lt was a simple life that my husband Paul and I lived here with our two young daughters, Susan, age 5, and Tracey, age 3. And we were grateful to an unknown forefather who had lovingly cared for this house and who had planted the now magnificent apple tree.

So, on this crisp, clear Fall morning, I attended to the task at hand. The old tree was groaning under its weight of red, juicy apples, and I knew I had a large job ahead of me. The girls and I would pick a boxful, and as I would sit on the backsteps and peel them, they would ride their tricycles around the yard and play. After I sugared the apples and deposited them in the freezer, we would start the process all over again.

It was a satisfying morning, and I was caught up in the beauty of the day watching my little daughters with curly blond hair busy at play. There was also great enjoyment in the knowfedge thatwe'd be enjoying pies and applesauce from our freezer all winter long. Occasionally, the girls would join me on the steps and munch on slices of fresh peeled apple. These were sweet moments as they'd interrupt their laughter and play and snuggle with me on the steps while they devoured my last ten minutes worth of peeling. We'd talk about important things like where worms go in the winter and they'd make bracelets from the curly lengths of apple peels and try to balance them on their noses.

However, the sweet aroma of the apples also drew an unwelcome visitor - one who was also trying to prepare for winter. As we sat there, me - peeling and coring, they eating and chatting, a persistent honeybee decided to join us. At first, I tried to ignore him, hoping that he was only passing through, but it soon became apparent that he meant business. I sat there wide eyed with alarm with hands sticky from my work, as he buzzed us trying to find a spot to land. As I vainly waved my arms around trying to discourage him - I considered my options, how should I handle this without frightening the girls?  Should we stay and fight it out or should we abandon the effort and run?

In those few moments, the bee narrowed his attention to Tracey who appeared quite unconcerned with all of this. When I shouted at her to run off, she calmly turned to me and quietly said "Daddy says if a bee bothers you, just blow on him and he'll go away". And as it to prove her right at that moment the bee touched down on her pudgy little hand, and as she gently blew him away he was gone.

How important was this lesson I learned from my three year old daughter that day and how much like God's ways the lesson was. I saw again the importance of gentleness. That day, Tracey reminded me that there are gentle ways to handle the annoying problems of life that buzz at us. How often l've needed to remember this.

Thank you, Lord, for the lesson you taught me that day through a three year old child and a honeybee.

I Got To Thinking The Other Day

By Becky Comeau

I heard an interesting song on the radio the other day that got me making a mental list as I drove along.  It was about 'what you got' from your parents in terms of training.  Here's my list:
From Dad, he taught me to:

• Swim
• Skate
• Ride a bike
• Drive a car (standard shift no less)
• Change a tire and check the oil in my car

I also got my love of travel and adventure from him.  He was a born travel bug and would have wandered the world were he able to. 

From Mom.  She taught me to:

• cook   [HER soups, breads, pies, and holiday meals are noteworthy]
• know how to keep a clean house [knowledge counts for something!!]
• garden
• love the smell of bedsheets fresh from the clothes line.  Now, would someone please invent that fragrance in a dryer sheet!!!!!!!!!!!!
• enjoy the seasons.  Mom still loves summer, camp life, and swimming.  We picked apples in season, went tobogganing and ice skating in the winter,  picked fiddleheads in the spring and loved the smell of mudseason as it hinted of better things to come.  We noticed the early buds on the trees and even enjoyed raking leaves in the fall.   We always LOVED that 13 mile drive from "town" to camp on those hot summer days BEFORE THE DAYS OF CAR AIR CONDITIONING.   Just about the time we hit China Village, someone just had to say "it's cooler already".  
• Love home and family.  Mom's relunctance to leave the nest for very long was the reason Dad didn't fully satisfy his travel lust, but, he understood that so well. 

What does your list look like??

"Aint nothing like the real thing, baby"

REPRINTED WITH PERMISSION

Written By:  Pamela M. Steiner

http://pamelasopenwindow.blogspot.com/2011/09/aint-nothing-like-real-thing-baby.html

The following is a quote of my own comment to one of my blogging friends who had just written about whether or not she should get an Ipod to replace her Palm Pilot..."Our Journey Together" by my friend Susan

This is what I said regarding her dilemma...
"I don't have either one...I have a desktop computer. My husband has a refurbished laptop. I have an ordinary cell phone. I don't need anything else. I feel "over-connected" with this old world now as it is. What I really desire is real friends, real faces at my table and not in my computer, love and laughter with family and friends in person. Gadgets are nice, and I don't fault anyone for having them...but I just don't want them. I may have to write about this in my blog since this comment is too long already! Yes, save your $$ until you are ready to get whatever you feel you need at that time. Until then, just enjoy the real people and places surrounding you each day. That is what really matters."

My friend Susan is currently battling a very serious and aggressive cancer. She is a young mother of one very active 2 1/2 yr. old boy, as well as a counselor. She tries to maintain her work, enjoy her family,and live a normal life as much as possible. Perhaps an Ipod would help her. Her Mother seems to think so...and it might be the right thing for her to do. I was not trying to be critical at all regarding her decision or choices. I was just speaking for my own self.

I've had friends tell me that I need to get a "Kindle" to read my books on...and I have no interest in that at all. I know, I know, I've heard all the wonderful endorsements for having such a marvelous invention to carry a whole library of books at my instant disposal with me anywhere. But why do I need to do that? I can only read one book at a time, and I like to do that in a comfortable chair, turning the paper pages, feeling each page as I turn it, and looking back at the previous page anytime I want to re-read what I just read in case I didn't quite get it the first time. I love to look at the cover of the book, read the fly-leaf, look at the copyright. A lot of the books I read are very old, (from my blog-page "A Few of My Favorite Things")and sometimes the pages are stained, perhaps a little dog-eared...and I have often found other people's old  

bookmarks...an old grocery list, a small card with notes on it, the names of other people who have owned or read the book I am holding in my hand. I love that. It helps me feel connected with the previous readers, or the author herself/himself! Please don't take away my real books! You just can't do all of that with an electronic gadget that has to be recharged frequently or might easily get damaged or stolen. My books can be picked up anywhere, anytime, and I don't recall ever having to recharge them to be able to read them. (I might have to recharge my OWN batteries sometimes to keep going...but that's a different story!)

I truly do enjoy connecting with many friends, old and new, through the medium of "Facebook". I think that is a wonderful invention and I have embraced it whole-heartedly! I love to post pictures of my family and share a piece of my world with the rest of the world. I do the same through this blog. But one thing I have to remind myself of often...this should not ever take the place of "real-life" friends and family...those who are here with me in the flesh...or who may be wanting to share a part of my life in a more tangible way. You know, a "real" tea-party...a lunch date...a shopping trip...a ride in the country with my hubby...a card game with our kids or friends at our kitchen table...laughing and talking and experiencing real quality time together...face to face...hearing each other's voices and seeing the smiles on their faces...holding hands in a time of prayer for a meal shared together...a hug when we meet, and another when we part.

Cell phones are a wonderful invention also...mine is rather archaic in that it doesn't do much except make phonecalls. I could add more to it, for a price...but why should I? It does what I need it to do...and sometimes I wish I didn't need it at all. It's hard to escape when people have my number...and I feel "naked" if I go out without it. I don't like being that dependent on a technological gadget.

I refuse to get one of those GPS thingys for my car. I have always prided myself on having a good sense of direction. Also, I try to look up places before I leave and if I need to, I print out the directions...or I do it the old fashioned way...I take an atlas (map) when traveling very far. It got our forefathers where they were going (even though they hated to ask directions)...I can remember my father telling us on our vacation trips, when we had been driving around what seemed like circles for quite a while, "I'm not lost. I know exactly where I'm going. I'm just taking the scenic route!" How many of you have ever heard (or said) that before?
Besides, everyone I know who has a GPS thingy in their car still can't find my house without calling me in the middle of the night after driving around for an hour on dark dirt roads...(I Love you, niece Debbie). Some places just aren't meant to be found with an electronic gizmo!!!

Come sit across my table and let's have a real visit...I'll even give you a piece of that apple pie (well, better give me some warning first so I can bake one!)

Well, speaking of "real people", my hubby is desiring my attention...so I need to bring this to a stopping place. Yes, modern technology is wonderful and definitely has a place...but let's please not substitute the mirage for the real thing. Let us constantly strive to embrace our "real friends" and loved ones with warm hugs and long audible and visible conversations. (You know, eye to eye and giving our undivided attention). Let us keep our mental faculties intact by exercising our sense of direction, handwriting skills (that's another subject to discuss since modern technology has made handwriting almost obsolete), mathematical skills (oops! I will NOT give up my calculator! I'm a bookkeeper by trade!!)

Let's think about these things...Good night dear friends, both near and far and through my open window of this computer. I guess modern technology isn't ALL bad...otherwise, you wouldn't be reading this now (and I would never have been able to send it to you!!!)

Pamela M. Steiner

Susan's comment to Pamela on her blog
Yes...this is what I was trying to get at and in my struggle could not get the sentiment right. I dont want a gadget...I want a warm hug. I want a luncheon chat without a beeeping noise that signals an email or a text. I want to look across the table at loving eyes. I love facebook but I love real better. Someday, I will reach across the table and squeeze your hand.  Susan R. Comeau-Nguyen

The Latest Fad Or Frugality?

My mother and I are having a debate.  It's silly really.  I am trying to limp along with my Palm Pilot and she thinks I should get an Ipod.  When my friends read this they will laugh because they know that I tend to "hate change" when it comes to technology and I tend not to upgrade.

I have had my Palm Pilot for five years.  I use it to keep track of my appointments.  The entire debate began when I informed my Mom my Palm was not synching and I was in danger of losing all my information.  I am putting off investing in an Ipod and she suggested my Palm was obsolete and that I should join this century and let her buy it for me.  My Palm tx is beautiful.  It has a touch, full color screen and if it would only synch I would be golden.  Why do I need another gadget? 

Our debating back and forth reminds me of something my Doctor said to me, when I asked her about taking a trip, "take all your money and spend it on trips and things" she said.  Then she added, "tell your husband to save for retirement and you, you should spend all of yours now."  That would be a pretty handy justification for just about anything my heart desires but it does not sit well with me.

I am torn between living within my means, buying responsibly, and dabbling at being a minimalist.  I can tell you that I have never been good at any of those three things.  My father always used to laugh at me and say, "you have BMW taste on a Volkswagen budget."  I am not deprived by any stretch of the imagination.  I have a beautiful laptop, nice cell phone, and I enjoy restaurants frequently.

My parents would move heaven and earth to ensure my happiness.  Mom practically admitted that there is a chance I may not survive this illness and she wants to make sure I have the highest quality of life possible.  I took immediate offense and snorted that I was not going anywhere and an Ipod will not raise my quality of life.

I have been examining the life I have lived to this point.  I am looking for the lessons that this journey is teaching me.  Part of it comes from my work as a therapist and examining things in general and part of it comes from a desire to check these lessons off as finished and move on.  I see things I wished I had done differently. I recall decisions that were not very responsible and money I had that was ill spent.  Making mistakes and having regrets is part of life.  I challenge anyone to look back on their life without finding your own measure of this.

I have consulted my budget.  I can afford to invest in a new Ipod in June.  In earlier blogs we have joked about me being a blood sucking weasel.  This time around I plan to put off instant gratification, save my money and then delight in the purchase once I am able to afford it.  I think I will enjoy it all the more.  As I travel this journey I am keeping firm hold on my humor and my integrity.

By the way, after several tries and desperate prayers my Palm synched my calender with my work computer.  Hooray!!  I just bought more time.

Susan

Daily Bread

I just made, and we just gobbled down some incredibly good sandwiches.  Susan mentioned that we found some 'bratwurst rolls" at Target.  They are delicious, have good flavor and texture and are just the right size (we seem to have a fixation on bread).  Anyway, as I was creating these masterpiece sandwiches with really nice ham, Swiss, tomatoes, lettuce, thin green pepper and onion slices and some Italian dressing drizzled on top, I got to thinking about a personal account I read once.  Someone wrote that while their mother always baked or bought fresh loaves of bread, she always made them use up the old first.  The point was that they never had the enjoyment of fresh bread because they always had to eat the stale, old, and dry stuff first.  What a shame, I thought.  To have the fresh and tasty right there in front of you and have to bypass it in favor of the old. 

I wonder if we do this in our every-day lives?   I hope not.  I hope that we partake of the richness that God has prepared for us and placed in our reach every day.  His mercy is new every morning and he provides our bread portion daily, hot out of the oven, fragrant, nutritious, and perfectly enough for our need that day.  For me, I'm pushing past the old, stale and dry.  I want the good stuff.  Now, would you please pass the butter?

The News

I saw my Doctor today who stated that she was not happy to see that my tumor markers have gone up to 844 from the 244 they were before I started Xeloda.  She was concerned that there may be progression of the disease so she asked me to do a PET/CT Scan, MRI of the brain, and is sending in a referral to a Urologist.  Then she wants to see me next week and if there is progression she is going to put me on a new IV chemotherapy treatment on September 22.

I have been having some problems with Urinary Tract Infections.  It seems I have been getting them one after another since May so it is important that we look into that further.  I have also had some numbness on my chin and eyesight irregularities which is why the MRI is ordered.  Additionally, I have had bone pain but we feel that this might be due to the Xeloda and not pain due to progression since I am not experiencing the pain when off the Xeloda.

If I begin the IV chemotherapy, my Doctor informs me that I will indeed lose my hair.  If there does not look to be progression I may continue on Xeloda but on a reduced dose.  So it seems that everything is up in the air once again.  I hate the idea that I may be facing another Thanksgiving while losing my hair.  I do not like it.  I was just getting ready to make a hair appointment to get this curly, curly hair of mine under control. 

My Doctor is pleased that I have had this disease since October 09 with relatively little progression.  I am fortunate that it has stayed in the bones and not spread to soft tissue where it would be much more difficult to control. 

Keeping my chin up. 

Susan

Waiting on Pins and Needles

I have an appointment with my Doctor on Friday.  I always like to try to go in a few days before and do my blood work and labs so that I can maximize my time with her.  The cancer center is not very far away from my home so it makes sense to drive over and take care of this.  Note: that this is something that I request and schedule specially so that when I meet with Dr. Matei we have all the information.

I have not had my tumor markers tested since trying this Xeloda so I am very anxious.  I thought I had them tested a couple of weeks ago on a friday.  I waited all weekend for Monday to hurry up and get here and then when I called I waited all day.  I finally heard from them on Tuesday and was informed that no tumor markers had been sent out on the lab draw.  Apparently, they had not been ordered.

Needless to say, I am waiting on pins and needles to see where I am tomorrow.  This whole process has been a lot of waiting.  Waiting to feel better.  Waiting for tests.  Waiting to see if this or that treatment will make a big difference.  Waiting for good news.  Waiting with much anticipation for the next leg of my journey.

I am reminded of a promise

But they that wait upon the LORD shall renew their strength; they shall mount up with wings as eagles; they shall run, and not be weary; and they shall walk, and not faint.  Isaiah 40:31

I will let you know about the tumor markers.  I am still waiting for the news.

Susan

Caution...could get stuck in your head!!

Dedicated to my brother Scott...probably the silliest of the Comeau's

Bit by Bit...Little by Little

I have been told this week that I look good and I have been told this week that I looked terrible.  I can tell you this week that I felt both.  Xeloda is no joke.  I have one more day on it and then a break.  It still knocks me for a loop.  A few times this week I have found myself on the mat with the referee counting and, though it was hard, struggled to find my feet.  I hear my internal coach shouting to me...is that you got?  I respond with, Heck NO!  I have guts all day long.  I'm up...I'm still moving.  I am not licked. 

Today, I awoke feeling a bit more refreshed and having more energy.  I am really looking forward to getting my tumor markers next Thursday and seeing what this stuff has done.  I am expecting some good news because this certainly feels as effective as the other treatments, if side effects are any indicator.

In the midst of all of this we are potty training our 2 1/2 year old son.  He loves his underwear.  It is a process.  We are vigilant.  We are positive and we are celebrating success. 

Sort of sounds like a recipe and I am applying it to myself.  My own thoughts sound more like...I am resilient, I am making forward progress, I feel better today....I have jumped the hurdle and am looking at this experience in my rear view mirror.

Onward and upward.  Hey!  To the Potty..Mister!!

Susan

Front Seat, Back Seat, Shotgun or Driver?

When it comes to your own support team, which seat do you occupy?  I have often written on this blog about how necessary a support team is but it occured to me this week that I need to play a leading role.  I am on a mission.  I am working hard to hold on to what I have and make forward motion.  I, hereby, declare myself, President and CEO, of my support team.

I will support myself in my recovery in the face of intimidation, dissenting opions and adverse conditions.  I will set the tone in taking care of myself, getting to bed on time, resting when I need it and eating to the best of my ability.  I will be honest about how I am feeling and will ask for help so that my loved ones my give it.

My decision may not make sense to anyone else but me, but I'm gonna go for it.  God bless my husband we do not see eye to eye on a lot of little things.  We have very differing approaches to financial decision making.  This week I reached my tipping point and went out and bought a brand new mattress.  I had been sleeping on one that we snagged free on craigslist.  I put some nice memory foam on it but, somehow, it just wasnt cutting it anymore.  Sometimes, I feel restless at night, or in pain or Huy is snoring.  We have set up a bedroom in the other room to give me a place to go.

I had spoken to him about it in advance.  He wanted to look for a nicer one second hand and I wanted to buy a new, good quality mattress.  I hurt too much.  I toss and turn too much and I needed it.  He was grumpy about it, especially when he saw the price I paid, but he came around.  He always does.

I am not suggesting that you openly defy your husband as a cancer fighting tool.  I am suggesting that when you know you need something, you can feel it, sometimes you must make an executive decision and go for it.  Our loved ones are limited in understanding at times because they are not living with the pain and the exhaustion that we can be hit with repeatedly.  I have already felt a difference having this other option.  It puts a smile on my face even when I am hurting pretty bad.  This little gift to myself shows promise of really helping me recover some energy and stamina.

Susan

Posted on Facebook for Those With Cancer...touching

A Look Backwards

We live in such a high tech world today and it is remarkable how quickly this has happened.  Does anyone really leave home without a cell phone strapped to their waist or stuffed in a purse or pocket?   I don't think, so but I wonder if this has made our lives better or worse?  We are so wired and connected it is is difficult to find any quiet time or "white space" today.  

I recall growing up that we had one telephone connected to the kitchen wall, and (amazingly) we had to actually sit at the kitchen table to be able to talk on the phone (we had a 10 minute time limit).  And, if no one was home, the phone just rang and rang until the caller figured out that there is "no one home". IF they really did want to talk to you, they would just call back later - or not, but you wouldn't actually know that unless they did because there was no phone messaging.  Also, if someone called when you were on your 10 minute phone call they would get a busy signal - no clicking and switching calls then ('sorry, got to get this'  means "someone more important than you is calling").   And last but not least, to be able to KNOW who was calling you, you had to actually answer the call by saying "hello" and then wait until the person identified themselves.  You couldn't screen calls or answer with some cutsie greeting because the phone (or TV or pc) has tipped you off. Thought of one more thing, you had to use a phone book or list because there was no auto-dialing; then, you had the advantage of actually memorizing phone numbers out of necessity.

OK then, here is the rest of the story. 

Back in the day, when you spent time with someone either riding in the car or going out to eat or whatever, you were actually WITH that person.  No multi-tasking then.  We didn't sit at some nice restaurant and either surf the net on our Blackberry or let everyone know on our Facebook page where we are and take pictures of what we are eating.  We weren't so much interested in being connected as "connecting".  We didn't interrupt a nice meal and conversation to take a call from a coworker or neighbor.  We didn't drive our cars with a cellphone on our knee to keep an eye on "our life" or take our lives in our hands by texting at 60 miles an hour.  We didn't let guests or visitors sit idly by while we chatted on our cell phones with someone else (we also didn't entertain with the television on). 

To be fair, I LOVE technology and technology has definitely made my life safer and easier.  But maybe not better.  Here's to "connecting" instead of being connected.  I think I'll give it a try (again).