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.

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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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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.

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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.