The Journey

We left Wisconsin early Wednesday morning.  It was 15 degrees outside as we finished packing the car and set off for our trip back to North Carolina.  We had coffee and cookies with my brother and sister-in-law and said our goodbyes, picked up some Wisconsin cheese for friends and started on the long drive.  In the past when we made this trip, I was all about getting there quickly and I would drive 1000 miles with two or three stops, my focus was on the goal.  It was a race.

This trip was different.  We decided to live the advice of  Ralph Waldo Emerson and Aerosmith who both tell us to make life about the journey, not the destination.  This time we stopped in Ohio for dinner with Gary’s brother and his wife.  It was delightful to catch up, exchange Christmas gifts, share a meal and a glass of wine with this couple who are important in our lives.  I am so glad we made the time and it reaffirmed that spending time with those you care about, in person, is what makes connection.

We spent the night along the road, then a leisurely breakfast before starting out again.  For lunch, we planned a stop I’d recommend to anyone who likes either good food or local arts and crafts.  Tamarack, in Beckley, West Virginia is huge and has some of the best artisans of the state represented.  They also have a world class cafeteria with specials that included locally sourced foods, deliciously prepared.  We didn’t try to set speed records, we enjoyed the lovely views of the mountains and the cities along the way and still got home before dark.

This is not just the case with literal journeys.  We need to pause and think about those little things that make each day special rather than racing for the weekend or the vacation, retirement, or whatever it is that we are looking forward to.  Living in the moment may sound trite or even selfish, but it truly is all that we have.  None of us know what tomorrow may bring, so we’d do well to make this “precious present” the best that it can be.

Christmas Eve

Gary and I just got home from the Christmas Eve service at the Unitarian Universalist Fellowship in Appleton.  The feeling of sacred community is still with me as I reflect on the service and recall my years of membership withthis dynamic and loving group of people.  Singing Silent Night with only the lights of the candles we hold is the essence of Christmas for me.  It speaks of the peace, the joy, and the love of the season.  It takes me beyond the warmth of friendship and into a more spiritual space.

As we remember the story of Jesus’ birth and think of how we celebrate Christmas, it also takes us back to the earlier Christmases of our childhoods.  On the ride back home we talk about the differences, how we and the season have changed.

Most obvious is the evolution to the commercialism.  Leaving church in the cloak of hope and joy was transformed to awe of a different sort as we drove past Walmart and Target, both open and heavily trafficked on Christmas Eve.  The giant blow-up Santas and Snowmen waved at us as we made our way home.  Houses sparkled with thousands of lights.  We were seeing the social side of Christmas, the secular celebrations of families and neighborhoods.

So which of these is Christmas?  Can it be both?  There are lots of presents under our tree that seem to indicate that at this house it can be a balance.  We can love the time of miracles and love the sometimes gaudy displays and presents.  It is all Christmas, it is all an expression of the Season and a celebration of the love that surrounds us at this time of year. 

My wish is that you find the love, the joy and the peace of Christmas wherever you look this season.  That you hold the possibility of miracles close to your heart.

Merry Christmas!

The Season of Christmas

I am writing this in the perfect Wisconsin scene.  Snow is falling, a fire is burning and the lights of the Christmas tree sparkle.  Lake Michigan is icy blue and there are deer tracks in the driveway.  It is a beautiful 25 degrees.

We drove the 1,000 miles from North Carolina to Wisconsin in two days, taking our time and stopping for long lunches and a bit of shopping, stopping for the night when the rain came down in sheets and it appeared that out little car would be drowned by the huge trucks on the interstate.  Shortly after crossing the northern border of  Illinois we stopped for lunch.  A Packer table cloth graced the foyer of the restaurant.  I was home!  It was freezing!! 

When we stopped for lunch in Ashville, NC, it was warm enough for tables to be set in the patios and sidewalk cafes.  Twenty-four hours later I was rummaging for my down parka and fur lined mittens just to walk across the parking lot.  There is a world of difference between Christmas in the South and here in Packer Country.

I have not been quick to get into the Holiday Spirit this year.  Since we were traveling, we didn’t decorate the house and our shopping is fairly minimal.  My walks on warm days in Mooresville showed the impossible combination of those huge blow up snowmen standing next to a blooming rose bush, or Santa on a dock next to a motor boat that looked like it was about to take him for a spin around the lake.  People were mowing their grass next to the parked reindeer.  It just didn’t seem right.

We drove into my little hometown of Kewaunee on Thursday night.  There was a bit of snow in the air and gale force winds buffeted the car.  The streets were decorated and downtown was festive with holiday trees in the park where our family feedmill once stood.  When we walked in the front door of the cottage, a Christmas tree in the livingroom (placed there either by elves or my brother) greeted us.  The spark of Holiday spirit was starting to creep in.

Last night we went to a Christmas party.  Everyone was dressed in holiday finery under their layers of down and wool, hats and mittens were piled nearby.  As we greeted friends in the beautiful historic hotel, decorated with trees and wreaths, the mood was festive.  We celebrated old and new friends enjoying the Holiday cheer and a tasty dinner.  Christmas is a week from tomorrow and for me, this is just about the right time to start feeling the season.

I start to itch when Christmas decorations appear in stores before Halloween; it makes me crazy if I hear Christmas music before Thanksgiving.  The commercial side of Christmas is too much, too early and too gaudy.  For me, it takes away from, rather than enhances the feelings that go with the season. 

Instead, I prefer to celebrate with those who are dear to me, to remember the smell of baking cookies and to sit in front of a fire with only that and the tree lights burning.  Sharing times with friends and family, admiring the Christmas tree, seeing the snow … this is the perfect way to start the Christmas season.

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The Mystery

The whole concept of Faith is a mystery to me.  I envy people of conviction who know a personal God and have no questions about the existence of the Trinity.  They are absolutely sure of their path to heaven, of forgiveness, and of the divinity of Jesus.  They have a set of rules which guide them and know the answers.   I am sometimes almost as envious of those who claim atheism and feel just as certain that life here is what we get and when it’s over, it’s over.  I, on the other hand, live in a world of uncertainty.

Perhaps it is the Christmas season, perhaps it is facing the unknown of my own mortality, but this has been on my mind more frequently recently.  I would love to have the answer, to know the truth.  But for me, it remains a mystery upon which I reflect with no clear conclusions.

I saw a sign in front of a church here (The South has many and varied churches) that said “Know Jesus and know heaven, without him, know Hell.”  Yikes!  Does that mean devout non-Christians and those who doubt will burn in Hell?  That certainly doesn’t fit with my understanding of a “Loving God.”  There are so many teachings that tell us not to judge, yet many who would refer to themselves as deeply religious are extremely judgmental of anyone who does not see the world through their lense, who border on hatred of those who are different.  Yet they seem firm in their “rightness” and see themselves firmly aligned with God in a way that allows no question, no doubt.

There are those who claim that it was the sins of (choose whichever you please) New Orleans, the Jews, Afghanistan are responsible for the devastation of hurricanes, the holocaust and war feel that their own relative comfort is based on being rewarded as a more righteous better person, that God punishes those who do not live their lives following the rules.

I find this frightening.  I have none of that certainty, but I do know that a God of vengeance is not a fit for me.  This feels more like coming from a place of hatred, not love.

I believe in the Sacred, I try to live with a focus of making this world a better place for others as I feel so fortunate to have the life I’ve been given.  I certainly don’t understand, and yet I talk daily with a God, a Spirit of life, whom I see as a force of love and wisdom that might guide me along this path.  This is not in the memorized prayer of my youth, but a rather one sided conversation.  I ask for guidance and for strength, as I think of those who are suffering, I ask for peace.  For those who are celebrating joys in their lives I ask for continued blessings.  I pray with gratitude for all of the richness of this life.  And I continue to contemplate the mystery.

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Vacation Reflections

Last night we flew back to Charlotte on a late flight from San Francisco.  The words of the woman behind me have haunted me since our return.  I think there is a valuable message in what she was sharing.

We were delayed in take-off and I was annoyed by her voice, the woman had one of those tonal qualities that rise over all others and are hard to ignore.  It was so intrusive that I couldn’t concentrate on my book.  Then the content of what she was saying started to sink in and my annoyance vanished.  She and her husband were celebrating their 50^th wedding anniversary with a cruise in the Caribbean and had missed their earlier flight so had been “patched through” via Charlotte, due to arrive in Miami sometime after midnight.  She talked a bit about having rarely taken trips together during their marriage and how she had so looked forward to this vacation, how excited she was to see another part of the world.

As we were readying for takeoff, the flight attendant asked for the woman’s cane and put it in our overhead compartment.  As we taxied to the runway, I couldn’t ignore the conversation as she shared that she was on dialysis and not only had the cane, but a checked wheel chair and a portable dialysis machine that she needed to use several times a week.  When I got up to stretch I could see that she looked very ill. 

My thoughts for the past 24 hours have vacillated between two points.  One is how fortunate that she is able to do this trip, that in spite of a wheelchair and the need for dialysis, she can fly across the country, get on a cruise ship and have a vacation to remember.  Second was sadness that she couldn’t have experienced the joy of travel while she was healthy and able to climb the hills and see those areas that are not accessible by wheelchair.  I felt sadness for them, for all they have missed.

This is in contrast to a wonderful week of family times and the fun of exploring the coast of California from Los Angeles to San Francisco.  We were tourists through and through.  We stayed on the Queen Mary, docked in Long Beach and used as a hotel, an elegant reminder of the days when Clark Gable and Winston Churchill crossed the Atlantic in luxury.  We drove up the coast and stopped to see the seals sunning, we walked beaches, had lunch in Malibu, walked the hills of San Francisco and ate seafood fresh off the boats at Fisherman’s Wharf.  It was glorious.

On the Beach At Malibu with Caleb

We also had several days with family.  A sit down Thanksgiving dinner for over twenty family and friends in Ventura was the highlight.  This is mostly my brother-in-law’s family, but they welcomed us a part of the Sullivan clan.  Then there was the fun of watching my grand-nephew play in the hotel pool, sharing lunch with my sister and her husband in Sausalito as we looked out at Alcatraz and sailboats gliding by.  We had dinner in Manhattan Beach with my nephews and their families.  It was a time to be grateful for family and for the opportunity to enjoy every moment.

The lesson is once again, don’t wait.  Explore your passions and take advantage of any opportunities to do what you love with those you enjoy.  For me it is travel, for others it may be theatre or the opera or spending time in the woods.  Whatever it is, don’t wait for retirement, for the kids to grow up, for the 50^th wedding anniversary or the perfect time.  Do it now because you never know when your world may change.

Thanksgiving

Tomorrow Gary and I leave for California where we will spend the Thanksgiving holiday with my sister’s family.  This is going to be a different Thanksgiving experience; I’ve spent most of the last 61 of them in my little hometown with immediate family.  My job was to bring the pies and the Jello salad and the wine.  This year we will be with my brother in law’s family, my nephews and their growing families will be part of the crowd.  Since flying with Jello is not a wise idea, I am on the clean-up committee.

While the venue will change, the main difference will be my very different way of looking at being thankful.  So much of what I took for granted in the past will this year be those things that I see as blessings.  It starts with family and all of those I hold dear and includes my feeling great and having the energy to enjoy this trip.  Every day I think about my good fortune, to be able to enjoy a lifetime rich with friendships and adventure.

I look forward to driving up Highway 1, that road with the most dramatic views of any I’ve traveled.  To San Francisco, where everything seems exciting and the seafood is fresh, I am excited about riding the cable car and walking on Fisherman’s Wharf. I am thankful for the ability to have this experience and to share it.

I listened to a quote today that talked about looking at each day with wonder, as if it were the first day of your life, and with appreciation, as if it were your last.  What a great way to view the world.  To have that ability to be amazed and moved by a sunset over the Pacific Ocean (tomorrow night over wine at my nephew and his wife’s home) and to celebrate and treasure every gift that the days ahead bring us. 

Have a wonderful Thanksgiving everyone.  Look for reasons to be grateful.

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 private email at jodiekacer@aol.com

Good News

Yesterday I referred to “cautious optimism” regarding my health.    Today I will do my best to explain why we are somewhat more optimistic and how that roller coaster is taking me back up. 

As my oncologist was exploring the possibility of me entering clinical trials due to some disturbing spots that had appeared on my bones and activity in the tumor on my lung, he spoke with a leader in Tarceva research at M.D. Anderson Cancer Research Center in Texas.  He prefaced our conversation with “This is good news.” That is something I always like to hear!   The physician told him that the spots may in fact be signs of healing, scar tissue, and not new growth.  He advised that we wait until another scan is done in early January before making any changes.     Even better news is that a second doctor at Sloan Kettering concurred.

So, once again the roller coaster is sending me on a wild ride.  I’m thrilled that we can say “experts” feel that the Tarceva may still be working.  I’m also reminded that medicine, especially Oncology, is not an exact science.  I’m hopeful, I’m optimistic, I’m visualizing the cancer cells being taken over by healthy tissue, and I’m praying. 

Hearing From YOU

This is a day when I am able to bask in the comments of others who have read this blog and to offer a bit of clarification.  First, the clarifying.  Several readers have asked me about leaving comments under the comment section.  As best I can determine, this option is only available to those who are members of Blogspot and/or have their own blog.  In view of that, I will change the message I often put at the end of an entry and ask that comments come via email.  I know that there has been frustration with trying to enter a comment and having it lost in cyberspace. 

Now to the comments that have gotten through.  I am delighted, first of all, to find that my entries have achieved the goal that I set out for myself.  That people find it interesting is the basic wish, but additionally my hope was that there would be value for the reader, that you, the reader, would find topics that touched a chord and perhaps offered guidance, caused reflection or answered questions.  I cannot tell you how touched I have been with the feedback that I’ve received. 

From a practical standpoint, I know that friends and family are finding this site a way to keep track of me.  To know how I am feeling physically and coping emotionally helps them stay in touch.  Sometimes I think that it is easier to express the emotional through the written word, probably I am giving a more intimate picture than I might in a conversation or an email.  I am touched by the number of people who make reference to something that I wrote in the blog as we talk on the phone.  Just this morning a friend asked about how I survived the October wave of company (very well, I loved it) and whether I had any news from my doctor (yes, I am cautiously optomistic).

Yesterday I got an email from a former colleague who shared her own cancer experience, thoughts that were triggered by the entry on exercise.  It gave me comfort to know that my experience with being exhausted at times was not unique.  She helped me recommit to the exercise program even on those days that I’d like to be lazy.  The help goes both ways.

Other entries from those with serious illnesses and reflections of caregivers tell me that I am helping them feel less alone, that comments in the blog help them feel connected during tough times.  I love hearing that readers are moved to laughing over some of the strange or challenging times I’ve found myself in.  I am touched to know that this blog makes a difference.

My hope is that every reader finds some value in this column.  That it brings comfort or laughter or the knowledge of what it is like to be in the midst of an illness over which one often feels powerless.  My lesson is that I can learn from those who are moved to give me feedback and I invite you to do so at jodiekacer@aol.com     

Offers of Help

How many times have we said it, “Let me know what I can do to help.”   We say it with all sincerity, we really want to help, but the person to whom we make the offer does not respond, doesn’t let us know what he or she needs. This can be frustrating when we don’t know what to do or it can take us “off the hook” for needing to get involved in a situation we might be uncomfortable entering.

How many times have we heard that phrase ourselves and not responded because we either don’t know what we need or don’t want to be a burden.  My guess is that this happens all the time.

This morning I got to thinking about the offer of a friend.  She called recently and had done some research that included sending me 2 very relevant and interesting articles. She offered to help with more scientific searches for clinical trials and information on the latest in lung cancer treatment.  A physician friend offered to be a resource to help me make sense of the information that overwhelms me.  These offers were very specific and so very welcome.

Family and friends have come to visit, invited me out for lunch, sent me books, painted a much loved picture for me, called, emailed, and sent thoughtful and funny cards.  An early example of this was when, one week post-hospital stay, my dietician friend Pam sent me a huge frozen apple pie, all the way from Michigan.  It made me laugh and was delicious, tho she might be in conflict with the National Dietitian’s Association.  My friend Jack spent two days of his summer helping me figure out how to write this blog.  My sister-in-law sent a care package of treats from Wisconsin.  I have an email file titled “Love” and a basket for cards and letters, in them are notes of encouragement and caring.  Browsing through these when I feel discouraged or alone brings me such comfort.  Those notes are gifts. These are from people who didn’t wait to be asked, they just did it, whatever it was, and for that I am most appreciative.

My guess is that most people are like me, they don’t like to ask for help and they don’t know what to offer.  It’s different to ask someone to pick up a loaf of bread or advice on a book to read.  But to spend time with us, to help us through a tough time, that is not easy.  I’ve never been good at knowing what to offer or to ask for.  I’ve not wanted to be intrusive, have not felt that I knew exactly what was needed or wanted…so I often did nothing.  When my friend Anna was ill, I hesitated to call because I didn’t want to bother her.  I wish now that I had been there for her more through calls and cards.

The Lesson:

This morning was an epiphany for me.  The Ahha came when I realized that so many  just did it.  They didn’t wait for me to ask (and I would never have asked), but just gave me a gift.  We need to act, not hold back, when a friend is having a bad time.  I cannot ever imagine seeing a call from a friend as a “bother.”  Also, if you have a skill that you are willing to share, what a wonderful way to show you care.

I am not hinting for another apple pie.  What I want to convey is the idea that if you have a friend in need, let him or her know that you care.  Send that email, make the offer, but don’t be surprised if there is no response.  If you think of something that you think would be appreciated, just do it.

As one who may have more needs as time goes on, I become aware that I must give up the pride in self-sufficiency and let friends know what those needs are.  Asking for help will become a reality for most of us some day.  When I put myself in the other’s shoes, I would love to be told what I can do, I would love to have that specific direction so that I know I’m on the right track.

Ask for what you need and want.  Friends are not mind readers, and most have never been in our situation.  Giving friends the opportunity to do something they know is valued will help them feel more a part of our lives. 

Expectations

It is one of those beautiful, crisp fall days.  The sun is shining, the sky is bright blue and the trees are shades of yellows, reds and browns amid the evergreen as they reflect on the lake.  Gary and I were enjoying a walk in an undeveloped area near our home when out of the blue he asked, “So, is this what you expected from retirement, living with an old guy in the South?” 
Pause….

First, let’s get this straight.  He’s only 2 years older than I am and I’m certainly not an old gal.  Second, most of what I’ve focused on in the last 6 months has not been what I expected.  It’s been the opposite of what I expected.  What I thought I would have was 25 years or so of healthy retirement, travel, a “better late than never” love affair, and some adventurous volunteer work to keep myself fulfilled.  I have had to restructure my expectations to meet reality. 

What I expect now is that today will be a good day.  That I will be grateful, every day, for what life gives me.  I hesitate to expect anything beyond that, although I want to be here to see summers in Wisconsin and trips to Europe and to see the results of our volunteer programs in Kenya.  I want to see my little grand niece and nephew grow up.

Yesterday we went way beyond the idea of not thinking past today.  We ordered a room full of furniture that will be delivered in 8 – 12 weeks.  What thoughts that sent through my mind.  Of course there were the niggling questions of how long I’d be able to enjoy this, but it is also a statement that I intend to be around to do just that.  My intention is to love this life and this furniture for a long time to come.

Now back to the original question.  No, this is not at all what I expected, but I wouldn’t change today for anything.  It is a beautiful day, I’m with someone who tells me he is glad I am in his life, I feel good.  What more could I ask from a Saturday in November?

Fighting Against Cancer with Fitness

This entry is written by guest blogger, David Haas, a cancer patient advocate with the Mesothelioma Cancer Alliance where he researchs and writes about programs like cancer support and fitness for all types of cancers. Thank you David!

Being diagnosed with cancer can make you feel like you've completely lost control of your life and your body. This feeling is especially prevalent when a patient has to deal with multiple surgeries and treatments with boatloads of awful side effects. The stress is overwhelming. Many people with cancer feel that there is nothing they can do and become deeply depressed.

The role of exercise in treating and coping with cancer is well documented and increasing in popularity. At one time, exercise used to be considered unsafe for people with cancer, but the medical community is finally beginning to see the light: Fitness is integral to the treatment and symptom management of cancer. The side effects of cancer and the treatments thereof like pain, nausea, depression and loss of appetite can be aided by simple exercise.

Physical activity leads to an increase in blood flow to the muscles and brain. This improved oxygenation of the body fights mental fatigue, boosts energy and stamina levels and promotes relaxation. Is also makes your heart and lungs function better, which is good news. Furthermore, exercising regularly means less stress because it fights the stress hormone, cortisol. Lower cortisol levels mean less feelings of depression and fewer cravings for unhealthy foods that strain the body and contribute to complications.

One of the most overlooked but most important roles of fitness is the one it plays in the balance of hormones. Hormones have a significant impact on all aspects of mental and physical health. By exercising, you are supporting an increase of hormones in your body that will improve your mood, outlook, weight and your ability to cope with stress and illness.
Fitness can be an excellent form of distraction. While you're working out, focus on your breathing, the number of steps you take or how many repetitions you do. This concentration will not only lead to a more productive workout, it will also keep you from dwelling on the unpleasant aspects of your life such as cancer.

One more good reason to engage in fitness during cancer is due to the fact that it increases the body's resistance to chemical damage and makes medications more effective. This means that cancer treatments like chemotherapy and radiation will cause fewer or more tolerable side effects while helping it to work better.

Caution should always be used with any kind of fitness regimen. Excessive exercise places great strain on your body, weakens immunity and can actually cause worsening of side effects and symptoms. Keep your workouts at or under 30 minutes unless directed by your doctor.

And Sometimes the News is Not Good

The roller coaster ride that is referred to in cancer treatment has peaked and is plummeting on a downward run.  While I referred to Tarceva recently as a miracle drug, it may not be working that miracle for me.

We met with the doctor yesterday for review of the scans performed earlier in the week.  After earlier signs that were very optimistic, the news this time was not what we had hoped for.  While the spots on the brain have remained stable after initially shrinking by half and other spots on the liver and lymph system have disappeared, the primary lung tumor was “showing more activity” and there were new spots on the pelvis.  Patients often develop insensitivity to Tarceva, but it is usually after years, not months. 

Both Gary and I received this news with shock and dread.  I’ve been feeling so good physically and emotionally, it is hard to take in the information that my body has been heading in a different direction.  The path I was on felt so positive, I was winning.  And then the doctor’s voice pulled me up short and reminded me that we may be in control of a great deal of what comes our way in life, but we are not in control of everything.  Is it Fate?  Genetics?  A test?  The Grand Plan?  Or maybe just life handing us something that we will need to cope with as best we can.

We do have options; I like to think that we always have options.  Chemotherapy can be combined with the Tarceva for a stronger punch.  The side effects would be more challenging to manage, but it might slow the disease process.  Another option could be entrance into clinical trials for drugs that are in the process of entering the market or are in developmental stages.  We focused on this after my oncologist indicated it would be the choice he would make for himself or his mother (I use to ask what the male doctor would choose for his wife, but as doctors become younger … I now substitute “mother.”)

I know very little about clinical trials, but I do know that my insurance does not cover them and none are local.  Since they are considered “research,” as opposed to tried and true treatments, any expense would come from my pocket.  This not only includes the cost of the actual treatment, but also the associated costs of travel to Boston, where Massachusetts General has a highly respected program or the equally highly esteemed Mayo Clinic.  How do you make a decision balancing unknown risk and expense with the potential for greater reward?

We meet again with the oncologist in two weeks to decide on a plan.  Today the plan that feels right is to take on the risks and see if I can be accepted into a clinical trial. 

There are all kinds of lessons here.  I so believe in optimism that the possibility of “Don’t get your hopes up.” offends me to the core.  I will continue to hope for the best possible outcome and will expect good things from this life.  When faced with challenges, I do think we need to explore the choices we have, sometimes looking long and hard to make sure we don’t miss any options.  We need to weigh the pros and cons.  We also need to talk with the experts and seek advice from them, but not to blindly accept that advice if it doesn’t fit for us.  Search your soul for the right direction.

  My next two weeks will be spent in deep soul searching.

You are welcome to take the opportunity to comment on this blog

or leave a private email at jodiekacer@aol.com

A House Full of Visitors

October has flown by in a whirl of company and fall projects.  While I certainly enjoyed our adult visitors, having my grand-niece and nephew in the house for a six day visit was a delight.  Michael is 5 and his sister Brianna is 3.   They are cute and smart and fun.  During their trip (which did include their mother and father) we explored the Tweetsie Railroad, a steam train that runs in an amusement park in the Blueridge Mountains, we spent time at other kid related venues, and I got lots of snuggles.  The best part of having kids in the house was seeing the absolute joy that they both see in life.   The look of pure delight as Gary helped Michael steer the boat into the slip or the giggles as Bri discovered my exercise ball, her favorite toy for most of the visit.

This visit came to be when in a weak moment I bought my nephew a “Mario Andretti Experience,” the chance to drive a race car around the NASCAR track at over 160 miles an hour.  When the time came for him to lower himself into that tiny little car, I thought I must have been crazy, but he loved it and I, amazingly, enjoyed watching him zoom around.  And … when will I ever be in the pits of the Charlotte Speedway again?  It was an adventure.

In the midst of their son’s visit, my brother and sister-in-law “dropped in” on their way home from a visit with their other son in Virginia (only six or eight hours out of their way) so we had three generations of family overnight.

We had other guests this month as well, the woman who hired me at Theda Clark Hospital almost 35 years ago stopped by with her husband for a couple of days on their way from Wisconsin to Florida.  Nancy and Jim have been great friends for decades and it was a delight to catch up on their lives, to share a boat ride, and just to relax and visit.  I have a watercolor that Nancy painted and every time I glance at it I smile, thinking of the friendship that it represents.

This morning my final October guest left for her winter home in Alabama.  Marsha and I have been friends starting in kindergarten and over the past 55 years that friendship has remained strong.  This was her first visit to my North Carolina home, and it was wonderful to share these days with her.

As this month nears its end, as the days shorten, I feel that contentment that comes with the more reflective days of autumn.  Again I am reminded of the role that family and friends play in my life, how important it is to spend time with those whose lives have been intertwined with mine for decades.  I feel so fortunate.

Lesson Learned Again:  Fill your life with the positive energy of friends and family, they bring joy and healing.

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or leave a private email at jodiekacer@aol.com

Side Effects

Tarceva is a wonder drug.  It is one of a class of cancer fighting agents that are called targeted therapy and they are designed to attack cancer cells in a way that is more discriminating than some of the other chemotherapy agents that can wreak havoc with the entire body.  I am thrilled to say that during my four months on Tarceva I have felt good, none of those horror stories I’ve heard from people on “Chemo” seem to apply to my case.  I’ve been fortunate.

That said, there are some interesting changes and annoying side effects from this drug which is fighting the cancer in my lungs and elsewhere.  First came the dry skin, kind of like an alligator’s.  To address this, physicians recommend Eucerin, similar in consistency to Crisco, to keep the skin soft.  This or another highly emollient lotion is applied twice a day.  I’ve come to terms with feeling kind of sticky and greasy most of the time. 

Next was the disconcerting appearance of a moustache, not uncommon in sixty-plus women, but distressing none the less.  I am now dealing with visible facial hair which has to be removed regularly.  By the way, there are little battery powered “trimmers” which cope well with this unsightly issue and they even come in feminine colors at your local drugstore  Because of the drying skin and associated sensitivity, it is not recommended that waxing or depilatories be used.

It is not just the upper lip that is affected here, on a recent Friday evening (it’s always on Friday) I felt like there was a grain of sand in my eye.  On closer inspection it appeared that an eyelash was growing down, and curling backward into my eye instead of curling up.  A call to the local ophthalmologist resulted in advice to use a lubricating drop to prevent a corneal scratch and come to the office for removal after the weekend.  Five of these errant lashes were removed after a fairly uncomfortable weekend.  And, as if that isn’t enough, my eyebrows are growing thicker and longer, think a feminine version of Andy Rooney. Vanity demands constant vigilance and a good pair of tweezers.

It is not just the hair issues that are distressing.  I’ve also become more prone to infections like an infected index finger that has plagued me for almost a month.  Two trials of antibiotics and an antifungal have improved the condition, but the finger remains tender and ugly.  Part of the dry skin issue is that the cuticle dries out and hangnails form, then become infected.  Using a highly protective moisturizing agent like Aquaphor several times a day is about the only thing that keeps this under control.

Also under the heading of infections is the need to be reasonable in avoiding situations where germs abound.  While Tarceva does not deplete the immune system to the extent of other chemotherapies, there is some increased susceptibility. I have had an ear infection and currently am coughing and sniffling with a cold in spite of being careful.  Good hand washing is a primary way of germ avoidance, but a couple of other pointers have come my way recently.  The dirtiest things we touch apparently include the gas pump, shopping cart handles (with more e-coli than a toilet seat according to a Today Show guest) and faucets and door handles in public rest rooms (use paper towels as a barrier).  Don’t kiss someone with a cold no matter how cute they are and carry hand sanitizer for those times you can’t wash your hands.

What I will clearly say is that these side effects, while mildly annoying, are easy to live with when the alternative is considered.  Of course the Tarceva is fighting my cancer cells and to have the energy and this level of comfort is wonderful.  The lack of some of the serious side effects of traditional chemo has me feeling very grateful.  Using common sense and making healthy lifestyle choices can eliminate some of the side effects or at least lessen their severity.  As I learn how to manage not only this disease, but everything that comes with it, it becomes clearer that I need to take care of myself in ways that were not part of my awareness before.

  For others in similar situations, I encourage you to explore what you can do not just to increase your level of comfort, but also to avoid the potential for serious complications.  In doing so, my hope is that we can make our lives more productive and pleasurable.

Hope and Fear - Can they Co-Exist?

Since the name of this blog is “Hope,” it feels strange to focus on fear as I did yesterday.  Ever since writing it, I’ve been thinking of how the two can link together.  An email from a friend, a blog comment and a long walk this morning have given me pause for reflection, and perhaps some answers.

In her email, my friend Lea suggests talking through those fears that haunt the dark hours of the morning rather than diverting attention elsewhere. There is value in facing and sharing our fears.  I’m not good at that, being vulnerable is not in my comfort zone.  While I would welcome the call from a friend in need, regardless of the hour, I’m just not good at saying, “I’m scared, can we talk?”  Just writing the words brings tears to my eyes.

Another friend, Jack (whose blog, http://www.gardensatwaterseast.blogspot.com/ you should visit), encourages learning from the moment and listening to the lessons that these, even painful, times bring us.  Read his full comments under the September 28^th entry below and know that focus on this moment, on what lessons it offers, is what we may need to rediscover the hope beyond the fear.

The lesson is that, if we let them, friends can be an incredible support for us during those times when we find ourselves in the depths of our struggles.  Hope does not always mean that we are going to get the outcome we wish for, sometimes it can mean that we share the burden and it feels lighter.  Sometimes it can be the recognition that people who love us will be by our sides through the worst of times.  While I visualize, hope and pray for a healthy future, my strongest hope is that I will have the love and support of family and friends regardless what the future holds.

In this case, two dear friends helped me through a difficult time.  It is naïve to think that more challenges will not be faced on this journey, but I feel that I am better prepared to face what comes as I remember the wisdom they shared.

You are welcome to take the opportunity to comment on this blog

or leave a private email at jodiekacer@aol.com

Finding the Fear

I’ve often asked myself if my reaction to this diagnosis is “normal” and wondered where the fear is.  I have felt fairly positive, hoping for the best and believing that healing will occur.  I’ve also thought about the “what if” side of things and know that regardless of what the future holds, I can cope.  That position has been easy to keep as long as I felt great and looked as I have always looked.  Then I’ve asked myself if I’m some sort of robot.

For many reasons, today was the day that fear came in and clutched my heart.   My looks have changed and my belief that I can sail through this illness has been shaken. I’m also afraid that I will die before I am ready to leave his planet. 

I’m writing this at 1:00 in the morning, the house is asleep.  I’m wide awake, I was unable to settle down in bed.  I avoided crying myself to sleep only because I got up and started writing in this journal.

For several weeks, the topic that slid into my consciousness has been the lack of fear that I feel around this whole illness.  It would seem that I should be frightened about all sorts of things, the progression of the illness, the financial implications, and the possibility of premature death.  I’ve been surprised that my feelings do not run to those things, and in fact focus more on feeling fortunate that my ability to enjoy life is intact.  I don’t get depressed, I don’t feel panic. Until now.

Those past thoughts were random, but suddenly during my walk I’d be thinking about funeral planning, banish it.  Then back to the prayer or meditation I often do on walks only to be diverted by thoughts of missing kids growing up, or who might like my jewelry and how things might otherwise be divided in my will, back to meditation.   Not only do I need to banish these thoughts, I need to effectively replace them with something else.  During my walk this morning I accomplished it by listing things I am grateful for, a trick that I use frequently when my thoughts veer to the negative.  Later I used the imagery of healthy brain tissue and at a later time, the little pac-man guys working to devour the unhealthy tissue in my body. 

We need to face and address the possibility that the outcome may not be as we wish, and not live in denial.  Writing the will, making the list of family treasures for the next owners, giving instructions to our loved ones regarding what we want near the end of our lives and beyond.  These are the preparations that all of us should be making regardless of our health status.  Preparing for death and doing whatever we can to make our families aware of what we want done both during our final days (hospice, care at home or in a facility) and beyond is a gift to those we love.  I encourage everyone, healthy or not, to have a durable power of attorney for healthcare, to see your attorney for a will, and to talk with your family about how you want decisions made in the event that your life ends or you are no longer able to make your wishes known. 

Then again, sometimes we need to address our fears and just cry, either alone or with someone we love and trust.  This just cannot take over our lives.  I cry at times when something on TV reminds me that my health is precarious, when I hear that someone else has a diagnosis that they will be forced to battle, when I see someone much older than I am enjoying life.  I wonder if I will survive to do the same.  To not do these things is to live in denial.  To attempt to push out the concerns totally is not the answer, we need to accept the fear and live with it in balance with our hopes and perhaps beliefs in a positive outcome.

What is not healthy is the obsessive processes of looking at the dark side of our futures.   Getting stuck there can only bring negative impact, in fact, studies show that those who dwell on the negative, on hopelessness, on fears are more likely to have shorter and less fulfilling lives.  We who have cancer and other terminal illnesses need to bring our focus to what we do have, the gifts of cancer.  Those relationships that are brought closer during a crisis, the ability to see the gifts of every single day, the clarity with which we see the blessings in our lives all become clearer with our focus.

Advice:  Learn how to meditate, there are lots of books and tapes available to help you with this, a yoga or meditation class might be helpful. The concentration and mantra of meditation has been shown to help train us to keep our minds clear, and also helps with alleviating anxiety.  Exercise, especially outdoor exercise helps take our minds from the negative, focus on the beauty of the outdoors.  Choose to walk or run in an area where you can appreciate the beauty of nature or lovely houses, window shop.  Cry with someone you love.  Write a journal.  If this is not enough, a good counselor is an avenue that many have found success with, a counselor who is trained to help you through the grief process to the place where you can appreciate the gifts.

Transition - Coming Home

September 26

We got back to North Carolina last evening and it is so different to be here.  Wisconsin was cool, fall was in the air.  Here it is warm and humid, back to shorts and a tee shirt.  On Friday I had a fire in the fireplace, here we need air conditioning.  It is amazing how things can change in one day.

The trip was relaxing; a lovely drive through farmland at the harvest and big city skylines, but the highlight of this drive is always the mountains.  I love the mountains with their strength and ruggedness, their shades of blue and green and brown.  The colors are barely starting to turn, but there were bright splashes of red, orange and yellow.  It was a bright sunny day for most of the trip, the perfect day for a drive.

As we entered North Carolina the sky became dark and then the rain came down matching my mood as we got closer to home.  I didn’t want to come back.  I already miss my friends and my home on Lake Michigan.  The fun and the vacation feeling of the last month was fading fast as we got closer to Mooresville.  I want to be sitting on the porch looking out at the eagles, not getting ready to do laundry and clean the house. 

The reentry from vacation back to reality can cause some unexpected tension.  Going from a time when the biggest responsibility is getting somewhere in time for dinner back to the responsibilities of running a house and having an organized life intrude on the peace and tranquility we came to expect during vacation life.  This can be stressful and in our case it led to a fight.

I’m not going to go into the details of the disagreements, but let me say that I felt taken advantage of while Gary felt unappreciated and insulted.  Both of us took things personally when that should not have been the case.   The positive feelings of the last weeks dissolved into anger and hurt.  Why does this happen?  Why does the re-entry shock bring out the worst in us?

My lesson here is that we were tired from the trip and ambivalent about returning home.  I loved the relaxed times with friends, the time the two of us had without the reality of life interfering.  On the other hand, I wanted to reconnect with my new friends in the south and looked forward to visits from northern friends and family from during the month of October.  It also was the transition from it just being the two of us to the added complication of Gary’s 28 year old son who lives with us.  There is a huge difference when a third person comes into the picture.  Being tired and newly in transition does not make for a good time to have discussions about conflicts and irritants.  We are hyper-sensitive and need to stay in more neutral territory until life settles in. 

The advice here is to enjoy the moment and then, give yourself enough time to make transitions and intentionally look at the positive side as you move into the next steps.   This is especially true when moving from a very stress free time into one where you have responsibilities and demands.  It is easy to get stuck on what is wrong when you’d rather be somewhere else, perhaps it is better for us to make a decision to look at what is right and celebrate that as we look at where we are, not where we've been.  Keeping our focus on those things that are good has another payoff, being positive is better for us on all kinds of levels.

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or leave a private email at jodiekacer@aol.com

Friendship is the Best Medicine

September 23

As I pack the suitcases and empty the refrigerator, there is awareness that I am not the same person who came here 4 weeks ago.   The past few weeks of being back in the town where I grew up have led me to the absolute conviction that family and friends are the best medicine for whatever ails you.  Almost every day of the past month has been filled with visits and phone calls from and to those people who have been in my life for years and who know like no one else can.  My energy is better, I feel and look healthier than a did a month ago.

I have spent this time laughing, reminiscing, catching up, crying, and hugging.  People who I’ve not seen in years stopped by or phoned to reconnect, my family and dearest friends were there.  The weeks flew by so fast that there was not nearly enough time to see everyone who I wanted to see nor to do all that I wanted to do. 

It is so hard to leave!  The time here has reminded me that Kewaunee is my home, my roots are here and a part of my heart is attached to this community.  When I go to North Carolina I lose that sense of my history.  Those I see who knew my family back a generation or more, those who remember me as a kid, that is a part of being in my hometown.  The small town feeling that makes a community part of us is a difference from the feeling I get in the suburban araea where I don’t know any of my neighbors by name and don’t know a soul at the grocery store.  Here I not only know that girl checking me out, but I know her parents and grandparents and maybe even the name of their dog.  It is a different world.

So how do we create that sense of community and develop deep friendships in those areas where people are transient.  Can we build that “home town” feeling?  I hope so. 

This month has taught me how important friendship is to well-being.  There is an intimacy that comes from sharing a lifetime of memories and with it comes a depth of caring and trust.  However, I am not sure that the years of history are absolutely necessary for deep friendship.  Can that feeling of connectedness be developed without the years?   That will be the question to ponder and explore when I return to my new home in the South.

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or leave a private email at jodiekacer@aol.com