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!!

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