Sisterhood

Last night I had an incredible experience.  Three women shared an evening of sacred friendship with me in a way that I have never been touched before.  It was an evening of healing and love, of spiritual connection that has left me with increased peace and strength.

It started with a phone call and an offer to bring dinner and then do a guided meditation for healing.  I’ve mediated on and off for years and doing this with friends was something that I thought would be both interesting and expanding.  Also a bit of a mystery, since these are not women I have spent much time with.  It’s more of a felt connection that we have not acted on until last night.

I did not expect the emotional response that I had to their offers of total focus on me and on my “greater good.”  First of all, each of them brought home made food that was delicious and meant to be shared.  A nutritious chicken vegetable soup, garlic bread made with garden herbs, a wonderful Greek Salad, the perfect start to a warm evening of shared experience.  The dinner conversation was social, but intimate.  The level of caring for each other and for me was palpable as we ate a simple, but exquisite dinner.

As we finished eating, we moved to the comfort of the family room where candles were lit and music played softly.  We moved into a more meditative, or sacred space as we each expressed gratitude and hope.  Then, MJ led us in a guided meditation for healing that surpasses any that I have ever experienced.  As the focus of the meditation, I was tucked under an afghan on the couch, while the others sat around me in support.  My eyes were closed, but I was able to feel the energy in the room, more energy than was supplied by the four of us.  There clearly was a presence of Spirit, of Angels, of family and friends who are watching over me.  Tears were running down my cheeks as we moved through this exercise.  I could feel vibrations; I could see wisps of color.  I felt peaceful and loved.

The meditation ended and the sense of peace prevailed.  We talked about the experience and how it affected each of us; it was powerful for everyone there.  As we opened the circle and moved back into reality, each of the women chose a small stone with a word inscribed and gave them to me…dream, hope, and create.  My instructions, mantras for my life. 

And then we had cookies!  They were yummy oatmeal cookies with chocolate chips and craisans.  It was the perfect way to end the evening of depth and sisterhood and nurturing.  What can be more nurturing than an evening with women whose sole purpose of that evening was to share themselves and their gifts.

Reflections:

I am not moved lightly.  As I think about connecting with angels and see wisps of light, it makes me wonder what changes are being wrought here.  I’m that practical gal, right?  But maybe I’m both, maybe one of the gifts of this illness is an opening to other ways of being and of seeing the world.  It certainly is teaching me lessons about being in control, about letting others help and support me. Perhaps it is expanding my awareness of the Spiritual as well.  As I hope and dream and create, it will be with an expanded openness to the new and the diverse. This experience has made more things possible and I feel blessed by new friends.

Beliefs Challenged

Sometimes we’ve held thoughts to be true for decades and suddenly, they no longer make sense.  For me, that is the case with anxiety and the spectrum of moods and feelings that I’ve always thought were things over which we had ultimate control. 

I worked on a psychiatric unit for over 20 years and was compassionate, loved working with patients from the “worried well” to the actively psychotic.  In the role of Occupational Therapy, we led patients to find alternative ways to deal with the issues that brought them to care.  We taught relaxation techniques, explored recreational and avocational activities, we led groups to explore more effective communications.  All of these, in conjunction with other therapies and medication, had the goal of developing coping skills and helping our patients lead healthier lives.

Now, this is my dirty little secret.  I’ve always felt that there was a part of us, as humans, that just needed to “buck up,” to “get over it.”  You’re depressed?  Well, think about something happy and move on.  Anxious?  Take a few deep breaths.  It always worked for me and I assumed that it was a choice.  Well, so much for that!

These past weeks on high doses of steroids have taught me a great deal about those things over which we do not seem to have much control and how significant effort may just scratch the surface.  Steroids are a complex and potent drug which, among other things, reduce inflammation.  In my case it decreased the swelling in my brain and most certainly saved my life.  It also fires up the adrenaline and makes me almost constantly anxious, irritable, keeps me awake at night, gives me heartburn and makes me insatiably hungry.  If you ever want to chat at 3:00 a.m., give me a call, I’m probably having a snack.

So, what can one do?  For me, I went back to my roots of OT and practiced what I preached starting almost 40 years ago.  I bought a stack of relaxation tapes and use them daily and at bedtime.  My sister-in-law gave me a wonderful set of Yoga instructions for breathing and a guided DVD (See http://www.sarahspeaks.com/ ) that elicit a relaxation response, I walk and meditate. 

It helps.  My blood pressure has dropped back to normal (a 20 point drop after using Yogic Breathing!), I feel less anxious and more in control.  But it wasn’t enough and this was a huge step for me, sleeping pills are now a part of my routine.  I resisted, thinking of addiction and dependence, but 3-4 hours of restless sleep a night was not making sense either.  The sleep deprivation was adding to the other issues.  Last night I slept, with chemical assistance, for 6 hours straight and got up feeling rested for the first time in weeks.

Reflections:

One of the things that this disease, or more accurately the disease and treatment, has done is to challenge a set of long held assumptions.  This illustration is just one of many.  In facing the future with optimism and hope, I need to be open to changing my frame of reference as I look at living life for today and for the future.   Many of the old judgements no longer serve, the rules have changed. 

What strikes me is that this is not true because I have a disease; it is true because I am a living and growing person.  We all need to be open to new ways of seeing the world, new ways of seeing ourselves and others.  We need to challenge our thinking and be open to new possibilities.  Life is not static, and my new thoughts surround looking at ways to add joy and comfort to my life, not to be stoic or stuck.

Comments are always appreciated at:

jodiekacer@aol.com

Identity

I’ve been a quiet feminist for over 40 years.  I marched for equal rights, supported equal pay for equal work, worked for women’s issues from leading a troop of Girl Scouts to volunteering with battered women.  I’ve believed that it is my role to be a partner in relationships with men and I pay my own way.  I am not "the little woman."  While working, much of my life was defined by what I did as a career, luckily, one which I loved.  Gloria Steinman was a role model, I even had a tee shirt with her quote, “A Woman Without a Man is like a Fish without a Bicycle.”  I loved that tee shirt.

When I was working, the particular line of the demographic sheet info read “Manager,” “Consultant,” “Supervisor,” and described the job of the moment.  It was part of my identity like my address and age.  In fact, a friend and I talked about the first time I needed to write “Retired” on a form and how that set me back for a moment to think about who I am without those titles.  I now play with a variety of job-like identities as a volunteer which include Human Resource Consultant to churches, Board Member of an international NGO, Volunteer ESL Instructor, and Blogger.  They all work, so does "Retired."

Imagine my chagrin when I checked in for my MRI last week and found that my professional status was listed as “Homemaker.”  What the Hell???  How did that happen?  Not that being a homemaker is a bad thing…it just reminds me of June Cleaver, not me.  Gary and I had lunch later at a little café sporting a sign, “It’s not that I don’t understand the concept of cooking and cleaning, I just don’t understand it’s relevance in my life.”  I’m not quite that bad, and actually am a pretty good cook, but I’ve always felt that there were far more interesting things to do in life rather than clean…and picking up after other people drives me nuts.  No, I am not a candidate for the Happy Homemaker Award of the Year.

So, how does that happen?  It feels archaic, my mother or grandmother’s generation.  Is it the culture of the South? 

And now, as I wait for a delivery of family room furniture today, I wonder if I can reframe my idea of what it means to be a “Homemaker” or if I need to insist that they change that label.  Gary recalls my words when I came into his house, this house, for the first time.  “This house does not show your personality, it tells me nothing of who lives here.” (I’m not always tactful either.)  Together we have made this a home.  Could we be homemakers?  We’ve added art from places we love, we’ve added color and carpets and humor.  We’ve made this house into a refuge and a place to bring friends and make memories.  Could being a homemaker be being about adding love to a house and leaving the spider webs be?? 

Comments are always appreciated

jodiekacer@aol.com 

The New Plan

I know that some of this blog’s readership checks up on my medical status through these lines.  Here’s the quick update.  Last week we met with both the Radiation Oncologist and Medical Oncologist to review test results and plan a strategy to address the growing size and metabolic activity of my primary lung tumor and explore the reasons behind the brain swelling and increased headaches.  The good news is that some of the brain activity may be the result of a delayed reaction to the treatments I had back in summer.  For that we wait and see what another MRI tells us in 3 weeks.  In the meantime I am back on a relatively high dose of steroids to take down the swelling, headaches are gone, but wine tastes funky again.  This should be short term.

To address the other issue, the treatment plan has been enhanced to include the simple little pill I take every morning along with adding two IV drugs.  One is to starve off the cancer cells and the other is a more traditional chemotherapy designed to destroy those fast growing cells.  This will be given in Charlotte (45 minutes away) at the Oncology Clinic every three weeks.  The hope is that this combination will be more effective in addressing the continued morphing of the disease process.  We’ll know more details next week after meeting with a Nurse Practitioner for teaching.  I learn every day!

I’ve had a pretty easy time of this, almost no side effects from the Tarceva and am hoping that I tolerate the additional treatment well.  I did have a wake-up on Thursday though when my hairdresser brought me up short with an incredibly insightful bit of feedback.

Before I go on, let me tell any of you who don’t know this that my relationship with the person who is responsible for my hair is one of huge importance in my life.  For the first year in North Carolina I traveled 1000 miles to get my hair cut because the bond was so strong and I didn’t want to trust my thin, fine hair to anyone but Marlene, my hairdresser and confidant of decades.  Reality set in when I realized this continued commute was just not practical and I found a woman through my church who has excellent skills as well (plus she is from Oshkosh, WI) and threw caution to the wind.  I had my second haircut with her on Thursday.

What I didn’t expect was her absolute honesty in pointing out that I was making negative statements about my hair and skin throughout the appointment and how, especially now, that was just not good for me.  I’m aware that my hair and skin textures have changed and frankly, have been using that as humor… but darkly. 

MJ, my new guide through the changing world of my hair care made it clear that messages I give myself need to be supporting and nurturing.  She told me to write down some positive affirmations to get myself started.  She was right.  I was giving myself and believing the comments about becoming less attractive and rapidly aging.  That’s not a good message and it’s not consistent with the way that I want to treat myself nor see myself.  Her honesty was a gift.

Reflection:

While the focus here is on appearance, I do think it is important to be kind to ourselves on all levels.  To nurture ourselves, especially during the challenging times, can be so important to how we hold ourselves in esteem and to our health.  The mind and body are connected.  My lesson, to be less judgmental when I look in the mirror, when I feel tired and nap or read instead of being “productive” and to be as gentle with myself as I strive to be to others.  And sometimes I need to work more on gentleness with "the others" as well, but that's another entry.

Customer Service

During the past two weeks, I’ve had two very different experiences with customer service.  The first is simply outrageous, the second had major repercussions. 

Gary and I have been looking for a clock for the family room wall for months.  We’ve actually bought two, both of which failed within days.  So, imagine how delighted we were to find that there was a clock store about 30 miles away.  We hit the road. 

As we went in, what greeted us was the unearthly squawking of at least 2 giant parrots who were about five feet away.  The noise pushed me right back out the door until I figured out what the source of that obnoxious sound was.  I entered with a chuckle, thinking someone would explain or they would be hushed.  Not the case.  A rather surly man came out and announced that they were hungry and asked what we wanted.  In response to my comment that we were looking for a wall clock he advised me to “look around” and went toward the back of his shop.  We looked, and I apparently violated some unseen boundary while looking at a group of antique dolls that were on display near the back.  He chastised me for being there, scolded me for not seeing a chair in the aisle that apparently anyone with a brain would know meant to stay out of that area and asked if we saw anything we wanted.  We didn’t, we wanted to run!

At no point did he ask if he could help us, try to distill down what it was we were looking for or offer a catalog or other options.  He was just unfriendly and unwelcoming.  It goes without saying that we took one look at each other and headed for the door, both of us wondering how on earth he kept a business going and what could make anyone that miserable.  You can be assured that we will never go back.

The second story is more troubling because of the impact, but it shows a contrast in resolution.  I use a mail delivery system for my drug delivery service.  They have given me excellent service both in phone contacts and timely delivery.  Until last week.

My last pill (Tarceva, the targeted cancer fighter) was to be taken on Saturday, but a delivery was scheduled for Friday.  I felt pretty safe, even knowing that we planned to leave town on Saturday for several days in Virginia.

Well, the meds didn’t come.  I called the specialty pharmacy in Oregon and a very nice nurse, full of apologies, told me that it had been shipped standard shipping instead of next day delivery, their error.  She assured me that a supervisor would call me shortly and gave me the UPS number so I could change the shipment and see if there were other options.  No supervisor called, UPS told me that I could not change the destination (so it would catch up with us), that would have to come from the shipper.  When I called back the office was closed.

The next morning I started again, calling a Florida location and talked with a supervisor there, also full of apologies and doing everything he could to make it right.  However, by this time he confirmed that we could not change the circumstances, but would have a supervisor in the right area call me back on Monday with delivery scheduled for Monday evening.  We called several commercial pharmacies, no one carries that drug.  My anxiety was high.

On the surface, this means I missed a day and a half’s worth of doses, but let me share the “collateral damage” of this error.  We planned to be in Virginia for at least 4 days.  Scheduled were a board meeting, a fundraiser (at which I was the speaker), a visit with my family (there visiting from Wisconsin), and an opportunity to say goodbye to my nephew who is heading off to sea for three months.  Due to the mix-up, I was unable to see my nephew off, lost the potential to raise funds for the non-profit I work with, and cut off two days of our trip.  I was not happy.

The call I got on our return, just after the Monday delivery, was amazing in repairing my ill feelings about this whole experience.  The woman who called me owned the problem as hers, apologized for the degree of inconvenience it had caused, and at my request told me what they plan to do to see that it doesn’t happen again.  She talked about using it as a training opportunity at the several breaks in their system and coaching staff to better meet the promises they make.  Then she offered me a gift card or a donation to the non-profit group.

Here’s why I was pleased.  They took this seriously and accepted responsibility.  They truly seemed to understand and be sorry for the inconvenience this caused me, and they outlined the steps they could take, both internally and with me, to make it better.  I was satisfied.

Reflections:

So, how does this relate to real life?  For me it is a clear illustration of how we can either make worse or improve a bad situation.  We all have some control to make changes and we can rely on friends to help.  We can keep our perspective.  Gary helped with calls and another friend took on the speaking engagement, we cut our vacation short and didn’t see my nephew but did have breakfast with my brother and his wife.  It worked out, perhaps not as planned, but it worked.  I’m fine, most of what we hoped for was accomplished, and I am home with a month’s supply of drugs and a donation on the way.  My learning is that when things don’t go as we hope, there are solutions.  We just have to look at our options and remember to treat people well. 

Fear Vs. Facts

Fear vs. Facts

A lesson many of us seem to learn over and over again is that the fear of something is often far worse than the facts.  Think of the fear of a flu shot, then the shot itself is hardly a scratch.  That factor of the unknown can be terrifying. The facts, even when not what we hope for, can be easier to bear than the fears that our mind creates.  Facts can be faced, planned for, talked about.  Options can be explored.

Yesterday’s doctor’s visit confirmed my fears that the cancer is growing, and growing at a more rapid rate.  Most concerning are the areas in my brain and the surrounding swelling in an area which can affect vision, balance, and the use of words.  It can also trigger big time headaches.  There is  increased growth in the lung tumor and those in the pelvic bones as well.

There are some options in treatment, the outlook is not dire.  Other good targeted therapies exist which cut off the blood supply to the tumors and there is a chemotherapy, less onerous than some, which may be offered as well.  The brain lesions will probably be addressed with stereotactic radiology as soon as we can arrange an appointment.

So far, other than a few controllable headaches, I am not in any pain and I live a very normal life.  This seems to surprise people as I participate in an exercise program, walk two or more miles most days, keep up with taking care of a house and have an active social life.  I’ve lost some weight, not a bad thing, and my energy is almost as good as it has ever been.  I treat myself kindly, this afternoon I’ll be having a massage and tomorrow we drive to Virginia to rendezvous with my brother and his wife as their son sails off to sea for several months, catch a board meeting of the Maasai American Organization and give a presentation on our project in Kenya to a women’s group in Richmond.  I’m not taking life easy.

Reflections:

I think there are lessons here.  One is to work to get facts as soon as possible, don’t be the one who worries about what those symptoms mean while being afraid of getting the answers.  We somehow feel that making “it” real makes it worse…nothing could be further from the truth.  Making it real gives us and our doctors the tools to catch problems early enough to have a chance to interrupt the process and make things better before it is too late.  Since the first time around, when it was almost too late for me, I am taking this very seriously.   It is as true with our bodies as it is with the leak in the roof or tension in a relationship.  Talking about it can help, looking at our options can resolve, ignoring it usually makes it worse.

My second lesson is to do your darndest not to live in that place of fear and let it take over your life.  We’ve all seen people who allow themselves to be consumed by their cancer, their divorce, or other threats.  While certainly, fear is normal, it is also destructive if not managed.  Living as normal a life as possible can help us cope positively.  Working on a hobby, finding fulfilling volunteer work, being active in your church, spending time with friends, all of these can give us outlets that take our minds off ourselves and put the focus in another, healthier place.

Finally, fear can be a good thing if it drives us to action, think about the tiger chasing our ancestors and the autonomic nervous system response of fight or flight.  We rarely see tigers in our midst these days, but our bodies have not caught up with that rush of adrenaline which is not good for us to carry around on a regular basis.  We need to calm the fears by whatever means is appropriate, and in this case it is getting the facts and exploring our options. Supplementing that with exercise, meditation, relaxation and social outlets can help us be healthier and take us out of that dark place.

The Fears Return

I last wrote about fear in October when sleepless nights were filled with thoughts of life ending before I was done living.  The ideas I talked about then have done a pretty good job of keeping fears at bay until recently.  I’ve been busy with the holidays, had two major trips, my life has been full.  Now, the holidays are over and I have tests scheduled for tomorrow.  I’m scared of what the results may show.

This is also fueled by the uncertain results from the last PET Scan, the question of whether it showed increased cancer activity vs. scar tissue.  It is also concerning that I’ve had an increase in headaches and other symptoms that could be nothing, or ... 

I got an email today from a friend who also has a checkup coming and feels similar fears, she describes it as “the cloud over my head,” and passes along this advice:  “Don’t let this disease “get you” …. Don’t let it take control…”  It made me feel less alone in my worry, but also raised questions.  So how do we do that?  How do we free ourselves of the overwhelming fears that threaten to consume us?  How do we not let the disease "get us."

Sharing fears with someone does work, I woke Gary up at 2:00 a.m. last week and we talked and I cried as he held me until almost 4:00, it was great comfort.  Meditation helps, diverting attention to “the now” is a key.  But, accepting that this is a scary disease and facing the fear might just be the secret.  What I have found is that knowing that I have the strength to accept whatever happens, that I can make peace with this disease has helped me.  Also, recognizing that fear is what one should be feeling makes it a bit easier to bear.

I’m not about to let it take control.  I continue to do things that I enjoy and spend time with those I love.  I exercise and make healthy choices in what I eat, I challenge my brain.  I choose to have fun in my life wherever I can.  I try not to dwell on the fears, but they are ever present, lurking in the shadows of my consciousness, popping out when I least expect them.  My challenge is to keep them in the shadows, remind myself that none of us knows the future, and keep my focus on enjoying the good things that today brings.  These fears must be acknowledged, but they do not have to control.