The Final Blog

Jodie died on Monday at her home on the shores of Lake Michigan in Kewaunee, Wisconsin. The lake was blue, the sky was clear and I was holding her hand when she took her last breath. Jodie's wish was to be home with her family and friends. She received her final wish, which made her life's journey complete. Gary

Update

I've received several emails asking about why I've not posted lately.  I am still feeling the side effects of the last round of chemo, including loss of coordination which makes typing difficult.  Hope to be back soon.

Reaching Out

When I decided to write about this topic, I knew that it would be difficult.  First of all, it makes me uncomfortable, second, it may offend.  Regardless, I’ve decided to plow ahead in the hope that it also causes reflection and perhaps some answers or guidance.  This started with a conversation with a friend who has also been diagnosed with cancer and he defined it so well.

The topic is the approach one can take with a friend who is having a difficult time.  In our case it is the cancer diagnosis, but for others it may be almost any life changing event or loss.  It seems that all of us respond differently, but it comes down to three or four general categories.  One, is the immediate call and offer to help, get involved.  The second, we wait awhile, then send a card or note and chose our level of connection.  It may be fairly superficial or it can grow to something more personal. Finally, there are those who are too uncomfortable and pull away.  For whatever reason, they are just unable to maintain a sense of intimacy and the relationship may be irretrievable.  In our discussion, we agreed that this is probably less a function of wanting to end a friendship than it is discomfort and fear of the unknown.

As best I can describe, these are the areas we identified.

First are those who just seem to know exactly what to say or do.  They don’t even ask, they just send the email or place the call at the right moment and let you know that they are there for you.  It’s not so much that they know just what to say, but they show courage in asking questions and giving of themselves.  It may be a book arriving in the mail…or a pie, or the friends that brought a meal, offered a healing circle, or a gift of original art.   It may be the question about fears of the future, talking about those topics that we think about, but may avoid because we don’t want to make our friends uncomfortable.    What I most noticed about the people who dove right in, is that most of them have been through a loss themselves; they have been where I now am in some way or another and at some level must know that what matters is the connection of the friendship.  The sweet gestures are such powerful ways to reach out.

At almost the same point are those who immediately contacted me and asked what I needed, wanted, or simply offered their compassion and friendship on whatever level I chose.   These are the friends who stay connected, from whom I always can count on a card or an email and know they are thinking of me.  It may not be “regular” correspondence, but for both of these groups, it is a comforting reminder that they hold me in their thoughts and that I know they are there if I need to connect.  Both of these are a bond that I hold dear and value every day, their names popping up on an email always make me smile.

Now this is where it gets difficult.  I am not sure that I would have been in either of these two groups before my experience with my needs for this level of friendship.  My excuse with friends who have been ill was that I didn’t want to bother them, didn’t want to call at a bad time.  Looking back, it was also that I did not know what to say, felt uncomfortable, avoided the pain that came with the contacts.  I would have done anything possible to help, I just didn’t know that it was as simple as “being there.”

At the next level are those who took some time to come forward and offered that “they just didn’t know what to say.”  They acknowledged the awkwardness and either made an effort to overcome it or dropped back in their level of contact.  A year ago, this is where I might have put myself and that is difficult to admit.  For me, it was pure avoidance of the pain, my pain.  I was avoiding my own pain at the expense of friendship and I am embarrassed.  One of the gifts that the experience of these last ten months has brought to me is that old friends have become more a part of my life and I know how precious that is.  To think that I deprived myself and others of that gift is very difficult to accept.

The final response is of those who have not made contact at all and have simply fallen off the map.  I don’t presume to know the cause, it could be that they just don’t have time, but hope that they might someday find a level of comfort with reaching out me or to someone else in this situation.  It saddens me to think that they might be the one losing out on the joys that connections bring; it saddens me that I might be missing an opportunity for deepened friendship.  My wish for them is that they take the step and send that card, reach out.  It could make the world of difference.

Lessons Learned:

I know that I’ve said this in many situations, but the risk of taking action is so minor in contrast to what we can gain.  To reach out to someone and make that connection gives us so many opportunities to grow and to learn and to be richer.  If you are hesitating to reach out to someone, do it now.  It makes the world a better place.

Comments are welcome throught this blogsite or at:

jodiekacer@aol.com

Gratitude

This has been a week of being grateful, on several levels, for the small and large changes that have taken place in my life.  First and most important were the results of the brain MRI that I had on Monday.  Our meeting with the Radiologic Oncologist on Thursday confirmed that there was a decrease in both size and activity of the lesions in my brain.  Additionally, the swelling of the surrounding brain tissue had diminished.  For me, the metastatic activity in the brain is the most worrisome part of the cancer diagnosis.  The potential for loss of cognitive skills as well as visual/spatial deficits frighten me more than any other loss. 

Secondarily, this means that I can slowly decrease the dose of the steroids and hopefully decrease the associated side effects which include anxiety, irritability, insomnia, and the puffy “chipmunk cheeks,” among others.  Life will be much more comfortable, for me and those around me, without steroids and maybe, just maybe, I won’t be eating that big sandwich at midnight.

The second big event was the move of Gary’s 29 year old son.  Steve has been living with us for the past two years, initially moving back to save money for his upcoming marriage.  When the engagement ended abruptly, the living arrangement continued and ended with the gentle nudge of a two month notice from his dad. 

While I knew that a third person in the house added to my stress, I had no idea how much of a difference it would make.  The unpredictability of his comings and goings, the sleeping and waking habits that were very different from ours, a very different concept of what is considered acceptable in terms of cleaning up after oneself.  All of these created stress and often conflict, often between me and Gary.  Now, I am not awakened by the garage door or footsteps in the hall at 2:00 in the morning, I go to bed after cleaning the kitchen and it is still clean when I get up, if I had butter in the fridge, it is still there when I need it for making cookies.  For me, the absence of TV and video game noise has made the house a calm haven.

Now, for those of you who’ve had kids, this may sound very petty.  However, I have lived alone for 30 of the 40 or so years of my adult life.  I’ve never had to deal with someone leaving their shoes right where I walk between the refrigerator and the kitchen table.  I’ve never had to share public spaces of my home with someone who was not at least as compulsive as I am. I’ve never had to think in terms of groceries being gone unless I ate them.  Having this change has been incredibly freeing.  I will tell you that for both Gary and me, the stress level has dropped dramatically, just based on our lives being more predictable and private. 

The third joy of this week was the result of the chemo being less of a wallop than I feared.  While this process is rather a pain when compared to that little white pill every morning, it is not the horror I dreaded.  I understand that there may be worse to come, but for now I’ve had no nausea, my appetite has been good, and everything has been manageable.  Let me also say that the staff of the Oncology Clinic has been wonderful in addressing my issues the moment they arise so that things don’t get out of control. 

There is a lesson here for all of us, and not just cancer patients.  We need to speak up if problems arise, not to “tough it out,” not to be stoic or strong when we don’t need to be.  There are all sorts of solutions available to us and others have been so understanding and compassionate in helping me through the problems at every level.  My new motto is “just ask.”  There is no reason on earth to be uncomfortable when you don’t need to be.  People want to help.

A note on hair loss:  Thanks to so many of you for your comments.  It appears that I have an open and tolerant readership since most of you responded that it made no difference.  At this point I think biggest issue is just getting through that initial loss and then the dealing with the outcome becomes routine and relatively uneventful. 

Interesting feedback from a Yoga instructor regarding a study at Cornell on the topic:  … to this she added that the anticipation and anxiety associated with hair loss is typically the most difficult of the experiences--far worse than the concern for or actuality of disfiguration, loss of breast, etc. She also noted that the majority of her patients later note that once the hair loss begins, they deal with it and judge it to be far less traumatizing than they anticipated. We talked about women sharing their emotions and reflections on hair loss.  Cornell is in the planning stage for collecting anecdotes for women to share.  Interesting topic.

Choices

We all have to make them, and right now (among others) mine is when to cover my head and when to go “natural.”  I do have feelings about this and want to share them, hopefully with feedback from you.

First, I know that some people are uncomfortable around cancer.  It is a scary disease and sharing the journey can be difficult.  One most visible part of that journey is the loss of hair and all of the associations it brings on.  I’ve now been without hair for a week and have watched reactions, heard stories, and experienced my own freedom and angst.  I like the freedom of towel drying my hair and not worrying about what I look like.  Luckily, those around me are supportive of the new look and call it “cute.”  I can be semi-comfortable going bald.  There are amazing stories of women, and probably men, who have lost their hair in the most public and dramatic ways.

The anxiety comes when I am asked sometimes very personal questions about my health or get the stares.  I know that this hair style is like wearing a sign that says “I have Cancer.”  I know that people are uncomfortable.  The questions is, do I care or do I want to help them develop a level of sensitivity that makes it okay to be curious.  The elephant in the corner could be me,  I could choose as my mission the idea that cancer is just another illness and the lack of hair is just another symptom of fighting the disease.  I could be a teacher.  I’d like to be pro-active in helping people be less disturbed by the visual effects of the chemo, make it less of a big deal to appear in public with a balding head.

On the other hand, there are some cute little hats out there and a bald head gets cold.  Some days it makes more practical sense to cover up for heat, other days it avoids sunburn.  Most of the hats I’ve seen are either a simple knit or an elaborate Carmen Miranda affair with poofs and bows.  I’m searching for simple and practical, with perhaps a bit of flair.  These make a less edgy statement than the bald head, provide cover, and allow options for those of us who might choose to vary the look or be a bit more discrete.  The middle ground, tho it still carries the cancer message.

Then comes the wig.  I bought two and wear them for dressier social occasions and where I am around people who I don’t know well.  I think of times when I just don’t want to go through the explanation or make a visual statement.  When I just want to pass unnoticed.  The issue with a wig is, for me at least, they get uncomfortable after a few hours, they get tight, they get hot.  I’m not big on sacrificing comfort unless there is a very good reason, so I often go without.

So I wonder what do others think?  Is it uncomfortable to see a bald female head in your midst?   Would you prefer to see her in scarf?   Can you talk about it?  I’d really love to know your reactions or for readers to share stories.

I welcome your feedback at this site or jodiekacer@aol.com

Vanity

On Saturday, the inevitable happened.  People told me it would, but somehow I didn’t think it was going to happen to me.  I thought I might avoid the hair loss that everyone tells me comes with the chemotherapy regimen that is part of this new treatment.  Well, it was not to be.  I was in the shower and had just shampooed my hair when I looked at my hand and saw what appeared to be the very furry paw of a bear.  Hair was everywhere.

Now, to set the scene here, there had been some thinning of my hair early on, noticeable if you looked closely, but still visually acceptable.  Then, about a month ago, the hair started to grow back.  Imagine my delight with less grey and some curl.  The hair was actually coming back thicker, darker and curlier than ever before.  It was kind of cute.

This was a shock, more of a shock when I combed it and another big mass was left in the comb.  This was no casual loss of hair, it was dramatic.  At that point I decided that there were two choices.  I could wait passively and see how this unfolded or I could take control and manage it myself.  The next step was a call to the friend who has been styling my hair since my move to North Carolina, she offered an appointment on Monday. 

I wish I could say that this came easily, but vanity is part of my makeup, more than I realized as I obsessed about baldness, wearing a wig, headscarf alternatives, and the general ideas about femininity.  Losing my hair was a bigger deal than I had imagined, and my anxiety over it was huge.  MJ made it painless, and rather a rite of passage in this process.  Her sensitivity was amazing.

First of all, when I arrived, she had a lovely flower at her styling table so that I could concentrate on its beauty rather than my process, she burned a candle and read my horoscope, fittingly advising me to “keep the grand plan in mind.”  That, along with the choice of an “Angel Card” titled “Release,” set the stage for me to let go of those negative emotions.  I did.  I released the concerns and the ego and the vanity and gave in to the warmth and caring that she offered me.  A lovely head massage and then the clippers set things in motion.  Within minutes my remaining hair was on the floor around us.  It was not traumatic, it was another step in the exploration of this journey handled with sensitivity and compassion.  Yet another of the gifts cancer brings us.

In the two days since my shearing, I’ve come to appreciate the simplicity of very short hair (about ¼ inch long). A quick toweling after the shower and it is dry by the time my teeth are brushed.  Shortly after my diagnosis, my brother in law, who is bald, told me about the day that he gave up his comb.  He talked about it being freeing and a significant step in simplifying his life.  Never having to worry about weather wrecking havoc with the hairstyle, the ease of a convertible ride, not having to remember to put that comb in the pocket.

I’m getting use to the look, rather a shock at first, but it is part of the reality of this disease and its treatment and I’ve made a decision not to contribute to cancer being taboo.  People will see me with no hair, but they will also see me with a wig and scarves.  So far, comments have been kind and it is fun to play with the different looks of my new wigs. 

It is nowhere near what I dreaded, but it is one more step of accepting the reality that I have cancer.  When treatment consisted of a pill I took every morning and side effects were insignificant, it was easy to live with some denial.  Now, a full day of chemo every three weeks, side effects that are harder to ignore, and now the hair loss that is obvious whenever I walk past a mirror, reminds that life has changed. I need to protect my immune system, take lots of pills, think more about what I eat and how I make decisions.  It all make it less easy to live in that world where I could live my life pretty much as I always had.  It is time to make some accommodations to this disease and live more comfortably with the idea that perhaps as long as this chemo continues (12 weeks of the intensive regimen) I might have to admit that my life will change. 

Lessons:

This issue of control is important in a disease where often the feeling can be that there is no control over anything.  There is.  We need to look for it, we need to decide that we will be in charge of our destiny to the extent that we can be.  To give up, to allow others or circumstance to make our decisions for us is an escape into helplessness and and abdication of responsibility.  One of the phrases that I’ve always been troubled by is when someone says…”I had no choice,” or “what could I do?”  Nonsense!  We always have choices, and if we are to take responsibility for our lives, we need to exercise those choices and not abdicate them.  Especially now.

The Nestbuilder

A few weeks ago I talked about being incensed over the professional title “Homemaker” on my hospital record.  I ended, reflecting that perhaps making a house into a home is not such a bad thing.  Now, as I am nearing completion of that task, I think it might just be where my life leads me right now.  This period of spending more time at home has led me to think that we need to be intentional about creating a special space for ourselves, a space that welcomes and nurtures. Our home, as a whole, needs to comfort and support, but additionally, everyone needs to have that spot where they can escape into a book, visit with a friend, watch TV or just look out of the window.

Yesterday we bought a new rug for under the kitchen table.  This replaces that last vestige of the “other life” that Gary lived here when he and his former wife were raising their sons, where he lived alone for the eight years before I came on the scene.  The robin’s egg blue is out. 

The green, rust and cream is in. 

It is a very different look and it is “us.”  Amazingly, we seem to always find one or two things that one of us loves and the other doesn’t, and then suddenly we’ll both say, “That’s it!” and stumble onto the perfect thing.  This rug was “it.”  It is the last thing that turns the house into our home.

It is central to have home be that place where we feel the balance of comfort, practicality and beauty.   For me, a nest builder, it has to reflect who I am and how I use the space.  It has to reflect who Gary and I are as a couple and work for both of us.  We put our feet up, eat in the family room, don’t always take off our shoes when we come in the door.  We live in this house and it has to stand up to that.

One of my favorite quotes is attributed to William Morris from the late 1800s, “Keep only those things you find beautiful or useful.”  For those of us who are facing a difficult diagnosis or other challenges in our lives, this comment makes even more sense.  We need to simplify and weed out those things that are extraneous.  A simpler life gives us more time to enjoy those things that are really important.  Surround yourself with what you love, when your eye lights on an object, it will it will remind you of a friend, a special time, your family.  Make your memories come alive as your eye moves about the rooms and light on your grandmother’s crystal bowl or a picture you bought on your last vacation.  An artist friend once gave me great advice, “Don’t buy something because it “matches,” buy it if you love it. It will work and will bring you much more pleasure.” 

The house feels different.  It feels complete, and it belongs to us.  That brings me comfort and as I look forward to spending time here as I cope with the side effects of the chemo and avoid the germ laden public, I am delighted to be in a place that makes me happy, that reminds me of the world I am a part of, and that I love. 

My advice: In addition to loving your home, I think everyone should have that special little nook that is your haven, that everyone create a space within the home that is an extension of what is loved.  That it contains memories and reminds you of dreams.  That it is the one place you want to curl up with someone you care about or by yourself with that great book and a glass of wine.  For me, it means having the best view from the window.  It means a comfy couch, warm afghan nearby, telephone close at hand.  But it also includes a picture painted by a friend, music playing in the background if I choose, memories of travel and family as I glance around the room.  It is the place where I sometimes meditate, where I might escape, a spot just for me.  Think of giving yourself that gift.

Immune System Issues

Today and through the next several days is the time that I’m told my immune system is at its weakest point.  My oncologist has cautioned me to pay attention to this in spite of the immune boosting shot that will give me added protection.  I’ve had a couple of nasty colds this winter prior to the chemo and spent several days on an antibiotic when he felt I may have been at risk for more serious illness.  This is also cold and flu season in North Carolina, the crazy winter (or lack thereof) seems to have increased the bugs that are circulating.

So, how does a normally social being (me) cope with enforced isolation?  This morning it was by getting seriously bummed by the decision to miss the Winston-Salem Pops Concert this weekend.  We were looking forward to dinner on the town and then the fun of the Symphony playing the Beatles, the music of our youth.  This weekend it will be disappointment over not attending church services and the associated coffee hour for catching up with friends.  Little things like grocery shopping and lunching with friends will be put on hold.  I will be a homebody.

An interesting aside comes from an article I read recently on germ sources.  Be warned.  First and foremost are public restrooms where toilets without covers spew e-coli in an eight foot range.  I found that particularly disgusting. The flushing device is bacteria laden, the seat is dirty and the lock on the stall is filthy.  Never put your purse on the floor of the stall.  Beware of faucet handles.  Wash your hands well with soap and hot water.  If that isn’t enough, a high percentage of people do not wash their hands, so door handles are contaminated as they leave.  Use the paper towel to protect your hands from the handle as you exit.  The next two items on the list are grocery carts and gas pump handles.  I’m now using those sanitizing wipes offered at the grocery and washing my hands first thing when I get in the house.  I also keep a little bottle of Purel in my purse for de-germing on the go.  My other new habit is to wipe down door handles, light switches, remote controls, the phone and computer keyboards and mouse.  I also wipe my steering wheel. 

Does this sound like I’m developing a germ phobic obsession?  I think it’s true.

The key with people contact is to be alert to anyone who shows obvious signs of illness and avoid them, but also avoid crowded places where airborne bugs may be flying around.  Thus, the church, the concert, but also schools, the YMCA and anywhere that little kids have a presence.  Stay away from restaurants that have buffet style service or a salad bar.  The “sneeze guards” are not terribly effective and food handling and temperatures can be an issue with that type of service.  

In your own kitchen, probably the dirtiest thing is your dishcloth or sponge.  Change it daily or sanitize in the microwave for at least one minute.  Also, throw away any food that is beyond its date stamp.  Don’t take the risk of a food borne illness, that is miserable and we are susceptible.  Especially if you have issues with your immune system, but also to be prudent, just use good judgment and you can cut your chances of being ill.

That is the end of my lecture on health, but it still doesn’t address what to do to avoid “cabin fever.”  Here’s what I’ve done so far. 

First, I loaded up on groceries for fun cooking adventures that are a bit more elaborate than my usual style.  I’m not going to work my way through “The Art of French Cooking,” but I did buy the ingredients for Boeuf Bourguignon, chocolate chip cookies, and several other favorites. We will be well fed.  I have a big stack of books to read, have taped some TV shows, made a list of movies to rent.  That will offer some diversion.  Additionally, I’m committed to keeping up with email and at least one or two phone calls to friends and family, and watch the news every day so I don’t lose track of the world.  In the worst case, I have some cleaning and yard projects that could consume a fair amount of time.  My intent is to keep my exercise routine in place and I picked up a couple of new meditation tapes for variety. 

My hope is that this is enough, and if I get bored we can take a ride or visit friends who swear they feel healthy.  As I type this, I’m looking out at a rainy day, but the ducks are swimming in Lake Norman, the birds are singing and tomorrow the weatherman promises sun.  In the big picture, a bit of boredom and disappointment over a concert is a small price to pay.  My choice is to give up a bit of the freedom and increase my chances of good health. 

The Latest on Chemo

Last Thursday I sat in a recliner for over five hours receiving the first batch of the chemotherapy cocktail that will be my standard every three weeks for the next twelve weeks or so.  There were five bags of medication that were pumped in over this time period and that made for a long day.  This is my third experience with IV chemo.  The other medication I took was a little white pill that I popped in my mouth every morning when I got up.  Simple.  If only it had worked.  This is a bit more onerous, but certainly doable.   I was given anti-nausea medication first, then some Benedryl to combat symptoms, then three IVs of cancer fighters Carboplatin, Avastin, and Taxol.  A powerful combination, which I visualize knocking out these cancer cells.

The next day I went back in for what I think is a wonder drug.  The shot is designed to boost the white blood cell production in the bone marrow, thereby increasing the power of the immune system which can be devastated by the chemo.  This does not mean that the immune system is not compromised, but it does mean that the affect can be more moderate.  The side effects of this were described as “bone pain.”  That sounded pretty unpleasant, but worth the trade off.

When we talked about the “new” chemo plan initially, I had a fair amount of anxiety about the side effects.   There was talk about fatigue, nausea, diarrhea, mouth sores, hair loss, loss of appetite, etc.  The list went on and on and I was thinking of life between bed and the bathroom as being in my future for the next several weeks. Friends who have had chemo, even recently, have told me to expect a bad time for at least a few days after every treatment. 

So far, I’ve been lucky.

The only possible side effect that I’ve noticed, and this is Day 4, is that I want a little nap in the afternoon.  I’m eating well, no urgent trips to the bathroom, and I continue to walk 1-2 miles most days, do yoga or strength training at least 3 times a week, meditate daily and eat normally.  I need to curtail some of my social life (large groups and sick people are out for now) and I am avoiding places that I think of as germ laden (public restrooms, gas pumps, grocery carts, buffet restaurants).  I ask people to wash their hands when they come into our house and wash mine frequently. 

While this diagnosis does hang over my head, life continues to be mostly normal.  I am fortunate and I am grateful.  I am also hoping that this trend continues.

Confessions of a (Sometimes) Critical Bitch

Now that’s a title sure to get attention! 

Some time ago, I participated in an exercise to examine our way of creating more joy in our lives.  One of the questions asked was what we needed to let go of in order to get more of what we wanted, more positve energy.  For me it is easy, it’s the letting go of the judging and criticizing that have been part of the way I operate for all of my adult life.  That focus that sends me into the negative side and is the opposite of the gratitude and abundance that I want to invite into my life.  I judge myself, I judge others, and I judge stuff.  It adds stress to my life when I, or others, or the stuff does not measure up to my expectations.  When people do not act in the way I deem proper, and when the standards that I set are not met, I can be nasty and bitchy.  And, when I’m nasty, I don’t particularly like myself. 

Lately, I’ve had two very clear examples of how errors in these judgments can be so wrong and so detrimental.  The first involves a woman whom I’ve known as a fellow volunteer for almost a decade.  I’ve always sort of passed her over as someone who is not very bright and manipulative rather that direct.  I’ve spent more energy avoiding being manipulated than I have on looking at her strengths.  The fact is, she is kind and generous and amazingly strategic in her thinking when it comes to the organization for which we both have passion.  I overlooked that.  She is very different from me, her gifts are in area where I have little understanding or skill.  What I didn’t see is that she provides a balance that makes us stronger and more effective as a team.  Why didn’t I focus on the tremendous energy and skills that she brings to the table?

Second is a person who I’ve seen as egotistical and almost toxic in a way that has made me want to go in the other direction if I see him coming, to ignore the call if it is his name on the caller I.D.  My initial and standing impression has been that his sole focus is on himself and making others aware of his superiority, that he has no interest in anything beyond himself.  Recently he shared a history of chronic depression and unhappiness that was soul wrenching.  Why didn’t I take the time to see his pain?

It seems that I am not only quick to judge, but also not willing to let go of that initial assessment until the compelling evidence can’t be ignored.  For someone who wants more joy and contentment in her life, this has to change.  The stress of the negative focus is certainly not good for me, and the amount of energy I spend being critical could be put to far better use.  So, how does one start?  Especially, how does on start again…it’s like quitting smoking or changing any other ingrained habit.  This is not my first effort to become more tolerant and welcoming of others’ differences, but I’m clearly more interested  now in not wasting precious time.

I already focus on gratitude and have mentioned here so often that I am rich in so many ways.  I am grateful and I am optimistic and I find joy in every day.  But this is different; this is such a habituated response that I’m not even aware of it until I’m so far into the grousing and complaining that it engulfs me.  But, perhaps that is the secret.  Perhaps I need to take time to consciously examine my negative focus as much as I do my positive, the difference will be letting go of one and enhancing the other.  I need to be mindful.

So, starting today, I will review and release those thoughts over which I waste time and energy, I will consciously take the time to see what positives I could be missing in the big picture.  I will look at annoyances as being “my” issue and not the “fault” of the other person.  I need to change the way that these thoughts are framed, bring myself back to the positive, and let go, just let go.  Dismissing others as irritating and not worth my time is a terribly elitist way of looking at fellow human beings, finding fault in the way the carpet is installed and complaining about it is a waste of my energy (either live with it or get them back to fix it).  For me, the idea of concentrating on a more constructive, positive path sounds like a much more productive use of my time and a much better focus for the mind-body connection.  I will practice letting go.  Starting now!

Disappointments, Options, Decisions

Last week I opened a letter from my insurance company, expecting a routine message about what money I owe to whom.  Instead, it contained a letter explaining why they would not pay for the drug regimen recommended by my oncologist, even after his consultation with the research group at two major research centers.  Now to be clear, these are not experimental drugs, they are all FDA approved, it is the combination that is rejected on the basis of inadequate studies to prove effectiveness of the combination.  They recommend (and will pay for) a more conservative treatment course that, according to my physician, "has shown good results.” 

To say that we were disappointed is an understatement.  For one thing, it makes concrete that Tarceva, the drug we felt so positive about because of the mutation studies and early results, is no longer working for me.  I took my last pill yesterday.  Second, the side effects of this plan are much more onerous.  On the cosmetic side, I will lose my hair and the steroid “moon face” and associated jitters will probably be in evidence since this combo does not address the still troubling brain swelling as the alternative would.  The accompanying nausea and fatigue are predicted for at least one to two weeks following treatment, so there will be one week out of 3 that I can plan my life around, otherwise the advice is to lie low.  The other, and probably most concerning issue is that this does blow out the immune system so that during the late winter and spring, the time when social situations are at their most germ laden, I will be even more immune-compromised than at my current level.  I’ve been advised not to attend church, the symphony or other gatherings during this most active part of my treatment.  I’ll need to steer clear of anyone with colds, flu or infections.  It’s going to be a lonely 12 weeks and I’ve never been good at coping with boredom.  I'll have to find a hobby, but it's only 12 weeks.

As we talked about options, once again the lack of exact science in medicine becomes clear.  The choices are around balancing the various pros and cons of each option, while living within the confines of the rigid rules of the insurance carrier.  I feel fortunate to have a physician who is willing to go over the choices, talk about the relative strengths of each, and be comfortable making a decision that felt very collaborative.  Additionally, we were able to look farther down the road at plans for a maintenance program that could include Alimta, the choice that shows a positive impact on the brain swelling and lesions.  

I feel confident that we made the right decision under these circumstances, and that this is the path that I need to be on for the next several months.  I also know that there may be some tough times ahead.  This relatively easy time I’ve had over the first eight months of this diagnosis may have more challenges that will shake up my comfortable existence.  What I also know is that I can handle it and can stay the course of gratitude for what I do have and for the team that is supporting me through this.  My brother called with moral support (and also to remind me that his birthday is today), friends emailed and called to check in, Gary took me out on a date the other night to distract me.  I love that people care and take the time to drop a note or a call.  The staff at the Oncology Center was terrific in recognizing that I was not my usual self and took a few extra minutes to listen and offer support. They are an incredible group of caring people who truly work as a compassionate team.  I am so fortunate to have people who surround me with loving energy.

In a time where it would be very easy to say, (I think this is a Wisconsin saying) “It sucks to be me,” I am saying that I am blessed.  As I type this in the early morning darkness, I feel overwhelmingly content with my life and so fortunate to be able to see this glass as half full.  That Attitude of Gratitude sounds so trite, but it is a position from which I want to view  the world.  I have hope, I have abundant love in my life, I am rich in so many ways and I feel joy everyday.  Life IS Good in spite of it all!!

 Comments on this site are always appreciated:

jodiekacer@aol.com

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.