BALD IS COOL - REALLY???

Hair loss is one of the most common side effects of chemotherapy treatment.  Of course, this depends on the specific drug.  One drug I was on didn’t affect my hair at all – I wish it had.  Maybe then it would have left the rest of my poor battered, beleaguered body alone.  Oh well, I survived that too! – onward and upward!!!

Chemotherapy drugs are extremely powerful medications that attack rapidly growing cancer cells. Unfortunately, these drugs also attack other rapidly growing cells in your body — including those in your hair roots.

The first drug I was on attacked my hair roots pretty quickly except, as I’ve said before, my 12 super-hairs.  Planning ahead, as I’ve been known to do, I ordered 2 wigs the minute I saw the first fallen hair on my pillow.  I played around with scarves and bandanas.  I wish I could wear them; they look so great on others.  But it turns out I’m more of an everyday baseball cap and special occasion wig person. 

Well, the wigs arrived and the hair left – all in a very organized, if depressing, fashion.  I never went anywhere without one or the other, but at home, I remained au naturel.  My husband has never cared about things like that, God bless him.  The mastectomy years earlier didn’t phase him and neither did my bald head.  He actually said it was a pretty head. He really is pretty special himself. 

I knew I couldn’t keep my naked scalp under cover forever, especially from family.  I was particularly concerned about how my 7 year old granddaughter was going to react to Grammy’s obvious baldness.  She is a most beautiful, sensitive young lady and I didn’t want to frighten her.  She also has the most incredible sense of humor – inherited, no doubt, from my side of the family!  I had expressed my concerns to her mother – my brilliant and equally sensitive psychologist daughter!  She said not to worry – she had it covered!  When they arrived, my little one gave me a big hug, looked at my catalogue hair piece and said, Grammy, can I wear your wig?  She spent the next hour modeling it, styling it, making Grandpa wear it, trying to talk me into letting the dog wear it, and examining my “neat” baldness.  She actually thinks I’m cool!  She likes to call me “The Gramster” when she approves of my “coolness.”

In most circumstances, the hair does come back.  In my case, it took about 4 months after the last treatment had been completed.  On the day of her First Communion, I emerged for the first time in public sporting my newly sprouted snow white peach fuzz.  She still said I looked pretty and cool!  Maybe it was pretty cool.  I don’t care, it made my day!

In a few short weeks, a new generation of grandchildren will be arriving to visit.  I’m anxious to see what our grandsons – 3 ½ and 2 – will think of Grammy’s new “hairless do.”  I still have the old wigs, so maybe we can have a wig parade.  There’s no dog to model anymore, but I’m sure they’ll come up with something on their own.  I’m not as apprehensive as I was the first time.  Little ones are much more accepting and resilient than we give them credit for – and so easily amused.  I’m actually looking forward to some fun with the whole wig thing – almost as much as I’m looking forward to their visit. 

MY NEXT WIG

Right now, the small percentage of my hair that remains really isn’t a lot better than being totally bald, but I’ll take it and be grateful!  I’m back to my baseball cap (NY Yankees) and beach hats – but a new wig had been sitting in the drawer.  Once again I had ordered one when the first hair hit the pillow.  But 4 years had made a big difference in my “natural” color.  The old wigs were called “salt & pepper.”  This one is more like “snowdrift with a sprinkle of soot.”

We went out to dinner this week to celebrate my birthday “twins,” Grandpa and our granddaughter.  I was no longer worried about her reaction to the baldness – now I couldn’t wait for the reaction to the unveiling of the new wig.  I knew they would start out complimentary and kind – and they did.  “Wow, Grammy, it looks so real!” “Grammy, it looks like it’s growing out of your head.” “Wow, Mom, I didn’t know you had gotten to the wig point yet – it looks great!”  Eventually the humor won out, as I knew it would, and there was lots of laughter and giggling at the table.  Fortunately the other patrons were very tolerant.  My granddaughter reminded me how smooth my bald head had been (like a baby’s butt) and how funny the dog had looked wearing it!  She was very happy that I still had the old wigs.  Now she’s planning the wig parade when her cousins arrive.  Even hair loss can initiate humor and create memories that will make us laugh for years to come.  We had a great time that night, and I look forward to a lot more “hairless” but kindhearted humor.

When I was recuperating from the initial diagnosis and surgery, family and friends were incredibly generous with their prayers and gifts.  Every day something would arrive – food, cards, flowers, inspirational books, special prayers guaranteed to work.  Everything was truly heartwarming but I was craving something else.  I just didn’t know what it was until a dear friend sent me a copy of “Not Now, I’m Having a No Hair Day,” by Christine Clifford.  Ms. Clifford hit the nail right on the bald head:

“Just once, I wish someone would bring me something to make me laugh. I had cried so many tears the well was dry.  I needed the tonic and release of laughter. I needed something to fill me back up.  People are the only creatures on earth who can laugh. To laugh is to rejoice in being alive. Laughter flings open the shutters and lets the sunshine in. A shared gift of laughter is a priceless gift to the spirit.  And it’s a great poke in the eye to the adversary that cancer patients are struggling every day to beat.”

Every day since, I’ve tried to find the humor in my life – humor in the baldness, in the memory freezes, the fatigue, the balance issues, the neuropathy, the scans...  Some days it’s harder to find, but it’s always there.  Concentrate and find the humor in every day  – then do two things: laugh out loud and share it with someone else. 

SURVIVAL TIP FOR THE DAY - CANCER , that vile, despicable, contemptible, gutless, cowardly excuse for a disease, hates laughter.  It thrives on fear and anxiety.  Throw your laughter in its face and watch it shrink away – at least until the next laugh!

CHEMO, FLYING FISH, DUCT TAPE – OH MY!

Anyone who has ever seen a drug commercial or read a drug label knows there are potential side effects to everything.  Those of us who have undergone chemotherapy treatment are familiar with the Fact Sheet that the Pharmaceutical company puts out for the specific drug we will be taking.  If you were to compare the two, you would most likely choose the chemotherapy.  A popular, over-the-counter headache remedy has more side effects listed than the atom bomb.  Everything from dry cuticles, to seizures, to sudden death - No joke! 

My Taxotere Fact Sheet shows: Bone marrow depression, Anemia, Numbness and Tingling in fingers and toes, Hair loss, Nausea, Diarrhea, Mouth Sores, Possible Fluid Retention.  Given the two side by side, I’ll take the chemo.  Now I realize that only .0002 percent of the population will get the severe reactions to the headache remedy.  Unfortunately, I’m the one who usually gets the weird stuff – in this case, I would opt for the tingling and fluid retention! 

I know I’m making light of this, but side effects are a fact of life for those pin-cushions among us.  The Fact Sheets are usually pretty accurate and, at least from my experience, you will probably get most of what’s listed.  But it’s what’s not listed that I’d like to talk about today.  

Hair Loss is not an automatic on any chemotherapy drug.  I know people who have never lost their hair – yet the Fact Sheet said they would.  Others have lost it when the drug wasn’t supposed to do that.  Go figure! What interests me is how people deal with it.  The first time, I was absolutely horrified and panic-stricken!  When I saw it on my pillow in the mornings, I just cried.  But, like everything else, you pull yourself up and deal with it.  Lots of people I know have shaved their heads rather than go through the day by day loss.  That seemed so final to me.  I chose to believe that it wouldn’t ALL fall out.  Well, it didn’t ALL fall out.  Exactly 12 Super Hairs, as they became known, survived.  Eyebrows, leg and arm hair, eyelashes – all gone.  12 very gray, very resilient strands remained – and continued to grow – on the top of my head – until the rest came back in, months later.  Everyone I talked to had a friend whose hair grew back red and curly (from straight and black) or the friend whose brother lost his hair and it never came back (thanks for that, by the way!)  Mine grew back exactly as it had been before – and I was eternally grateful. 

The second drug I took left my hair alone.  It had other, more curious side effects.  I’ll save that for another day. This current drug is slowly eliminating my hair – but only the dark ones.  The gray ones are hanging on.  It’s really very bizarre – I have about one-quarter of my former volume, all gray, but obviously tough.  I’m halfway through the treatments and I still have some hair left.  Only time will tell, but obviously in gray there is strength!

Balance is something you don’t hear discussed too often as a side effect, but it has been a problem for me since my very first treatment.  I try to do some Yoga, but I think I spend more time in Child’s Pose than anything else.  The closer I am to the ground, the safer I feel!  It actually got so bad last year that I had an MRI of the brain to rule out other causes.  I think the Doctor enjoyed giving me the results – “...scanned the brain, found nothing!”

Retention – of anything in my brain – is a real test.  This side effect only seems to affect me within the first three or four days after treatment.  Supermarkets are particularly difficult, as are recipes.  Normally, I can run through a supermarket, with my list in hand, like an Iron Man Shopper.  During this period, I can’t remember more than 1 item at a time and I have little or no idea where that item might be found – this in a supermarket where I’ve shopped for eighteen years.  Recipes take five times longer to make when you have to keep referring back to it to see what comes next.  Then, it leaves as quickly as it arrived – Thank God!  My husband has gently suggested that I don’t bake during this time.  YUK!

Aphasia – in a mild form, yet it’s still there.  This seems to pop up around day four and makes me sound like a complete moron.  I’m usually relatively articulate, thanks to twelve years of nuns who drilled vocabulary into my brain, but all that flies off on the wind on day four.  I’m lucky if I can string five words together into a sentence – no words being over three or four letters.  This is not my day to play Words With Friends! On top of this comes my personal form of Tourette’s Syndrome.  When I open my mouth, I’m never sure what will come out.  Fortunately the words are G rated, but not they’re not the right words. 

 “Honey, look at that gorgeous fish that just flew by!”

“What just flew by?” 

“That beautiful fish!  Didn’t you see it?”

“A fish just flew by?”

“A fish? – no, a bird!  How could a fish fly? Oh, I just said fish, didn’t I?”

Words just appear out of the blue – never fitting the situation, but good for a laugh.  This goes away relatively quickly – again, Thank God!

Raw nerves, right on the surface – I guess this could come under mood swings, which are very common, but sometimes the visceral, primal nature of it really surprises me.  You’re all familiar with my “performance” at the car dealership, but there was a near miss at a Home Depot recently.  I thought I was over that side effect until the next treatment, but I found myself in Home Depot, simply putting my empty cart out of the way, against the wall, behind the bank of registers.  A cashier took issue with my placement of the cart and she felt the need to tell me and show me, in detail, where the cart should have been placed.  Only for the grace of God and the fact that my husband was dragging me out of the store, I would have told her the PERFECT place to put the cart! 

Putting chemotherapy drugs into a human body is like putting regular gasoline into a BMW.  Nothing will work right!  Thank God our bodies are more resilient and soon will be back to normal – whatever that may be!

SURVIVAL TIPS FOR TODAY: Try to identify when your side effects appear and try to work around them.  Sometimes a long walk helps; sometimes duct tape over the mouth does the trick.  Try to laugh about it.  Just remember: it’s not FOREVER, it"s not YOU, it’s the DRUG!  You’re PERFECT!