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.