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!

THE VERY BEST MEDICINE OF ALL

Today was one of those unplanned, what-should-we-do-today? days.  Being retired and currently unencumbered by homeowner responsibilities, we are often presented with opportunities to be spontaneous – to be impulsive and free!  The operative words here are “presented with” opportunities – but do we take advantage of them and make the most of them?  Unfortunately, not as often as we could – and should!  Usually, we can make a case for something we really SHOULD do instead.  And our weeks are usually pretty well filled with doctor’s appointments, or something related to medical “stuff!”  Well, today we walked out the door, locked it behind us, and went exploring in our new environment.  It was the very best medicine of all – no time-restraints, no specific plans, lots of sunshine, laughter, new discoveries – just freedom and pure joy!

We took the Jeep, opened the windows, put in a Zac Brown CD and sang along to “Knee Deep in the Water” – loud and very off key.  First stop was the Canaveral National Seashore, about 3 miles from our condo.  Being a senior citizen, I paid $10.00 a few years ago for a permanent pass to the park.  We call it my “Old Lady Pass.”  I don’t care what anyone calls it; it allows us entrance to one of the most beautiful and pristine National Parks in Florida.  You won’t find cars on the beach; no places from which to rent rafts or buy hot dogs; no pier parties; no looming condos; no surf shops; no motels or lights.  You will find 23 miles of pristine beaches with large-grained sand, heaped into dunes like Mother Nature intended - untainted by car exhaust and unleveled by bulldozers. The Canaveral National Seashore, which includes beaches from south of New Smyrna Beach to Titusville, is one of the last of the Florida wildernesses.

Turtle Mound is the highest shell midden (heap) in the nation and located at the northern end of the seashore. This two-acre site contains over 35,000 cubic yards of oyster shell, extends more than six hundred feet along the Indian River shoreline, and stands about fifty feet tall. (In prehistoric times, it was at least seventy-five feet high.) Visible for miles offshore, the mound has been used as a navigational landmark since the early days of Spanish exploration.

You can swim or fish in the ocean, walk the nature trails, climb the Turtle Mound, fish or kayak in the lagoon, or just do nothing!  Today we decided to check out the fisherman on the beach and see what was running.  No one was admitting to any great fish stories, but we did come across an amazing discovery.  We had been there many times in the past, but usually with a purpose – catching dinner!  Today we just wandered the beach and, being shelling nuts, we realized that we had been missing something incredible all this time.  We found the motherload of shells!  There are other special spots we have come across that, depending on the tide, have more than their share of beauties – BUT this was beyond belief.  Our pockets were so full walking back to the Jeep that we had to hold up our shorts with both hands so the shells didn’t take us down – and probably get us arrested for indecent shelling! 

Our next stop was to check out a playground we had heard about at Bethune Beach, just a stone’s throw from Canaveral seashore.  Our young grandsons will be visiting soon and we wanted to check out some of the local toddler hangouts for them.  Considering the average age of the residents in our area, I didn’t have very high expectations for this playground.  WRONG again!  It’s modern, safe, bright and colorful – and it comes with a beautiful fishing pier on the lagoon, covered picnic facilities, and restrooms – all adjacent to the playground.  We spent a good half an hour watching a dolphin playing within 20 yards of us and a huge brown pelican just floating around and looking for lunch.  Kayakers were in and around, also being entertained by the local wildlife.  What a terrific find! 

We left there and drove a few short miles to an area where I thought I recalled seeing some sort of nature trail.  We thought we would check that out.  It turned out to be the Indian River Lagoon Preserve Park.  The park includes 200 acres of natural uplands/wetlands and has a 2/3 mile walking trail featuring eco-educational signs posted along the path with information about the natural habitat. As you walk through the paved path (very wide for walking or biking) you will encounter the elevated sign posts with detailed information about the native bird life, invasive species, animal/mammal habitat and more.  It wasn’t exactly what we were looking for as entertainment for toddlers, but Grammy and Grandpa had a great time. 

Next we decided to see what the Marine Discovery Center had to offer.  I knew they did Eco tours and kayak tours, but they also offer a variety of hands-on and feet-wet summer adventures. Activities include island and laboratory investigations, arts and crafts, kayaking, fishing, snorkeling, SCUBA diving, surfing and more. What I enjoyed today were their hands-on exhibits of whelks, and crabs and all sorts of aquatic creatures.  Since there were no classes in session, we had the opportunity to survey their classroom.  Tanks and microscopes and nets and ...  I’m not really sure what most of it was, but it was very impressive.  I’m sure kids never want to leave.  We really didn’t either, but the day was beginning to wear on me.  Even fun can tire one out – especially this old lady! 

All in all, this turned out to be one of my most favorite days.  Medicine comes in many different forms.  This was, by far, the most enjoyable form and, I truly believe, just as vital to my recovery as all the others.  Living with and fighting cancer is a journey as well as a battle.  Try to put some joy into the journey – it will also build your store of ammunition for the battle.  

SURVIVAL TIP FOR TODAY:  Find joy wherever you can and incorporate it into your treatment plan.  

Choosing Your Team

On Thursday, I completed Treatment #4 of a planned 6 and all went well.  My cancer antigen level has dropped significantly which is a wonderful thing!  We actually made 4 trips this week between labs, doctor’s appointment, chemo, and a follow-up injection – more than the normal routine.  It got us talking about how comfortable I am with these people and how essential they all are in my healing process.  My husband commented that it made him feel so much better seeing me come out of the office laughing and smiling.  Choosing your medical team is so important on so many levels.

The doctor-patient relationship has changed over the years.  We used to be willing to go along with whatever our doctor recommended – after all, he or she was the “DOCTOR!”  Patients are becoming more pro-active, more questioning, more an equal partner in their treatment.  It is critical that, once you settle on a treatment plan, you feel confident in the physician’s skill and their ability to treat your cancer. 

Second opinions can be extremely helpful, both clinically and psychologically.  They can also be had at any time before or during your treatment.  Sometimes you may have concerns about a recommended treatment – other times you may just want to hear it confirmed from another physician.  Before beginning this most recent treatment, my own oncologist suggested that I talk to the doctors at Moffitt Cancer Center in Tampa to get their opinion.  I resisted at first, feeling it wasn’t necessary, but we did go.  It was an incredible comfort to hear one of their all-star oncologists tell us that he would have recommended the same treatments since day one and would definitely recommend the one scheduled to begin.  Cancer feeds on anguish and pain and fear.  But when you have your chosen team of medical professionals in place, your fear is lessened, the pain is eased, and the anguish is shared.  You need to feel SAFE in their care. 

I have been blessed with a phenomenal team for the past 4 years.  They have each played a huge part in my journey.  Their caring ways are overwhelming.  Their compassion is heartwarming.  Their sense of humor is ever-present and so healing. One day when we were discussing a post-surgical incision problem, to describe the area of the pain, I used the example of where the counter would hit me when I was doing dishes.  I left that day with a signed prescription saying that I was “medically unable to do dishes anymore.” It didn’t carry too much weight at home, but the humor behind it was priceless. There is always laughter in that office.  There is always love, more so when I bring cookies, but it’s always there.  Of course I have already told them that if anything happens to me, the secret cookie recipe goes too! 

I can actually call that office any day, any time and I know I will get to speak with someone.  I will get an answer to my question, or I will get a compassionate ear in which to whine.  To a cancer patient who is frightened or just in need of some reassurance – that is invaluable.  In my 67 years, between health issues and my profession, I have spent a lot of time in medical surroundings.  I can honestly say that what I have found is rare – but not impossible.  They are out there!  Find your own special band of angels and let them share your journey. 

When first diagnosed, most of us will head for the Internet.  It’s a wonderful resource and I use it myself all the time – BUT, beware of the source.  There are some truly horrendous stories and myths out there.  Remember, anyone can post anything, even if it’s wrong.  One way to sort out the sites is to determine where the funding is coming from.  Addresses ending in .com (commercial), .org (organization), .edu (education), and .gov (government) are clues to the site’s funding source, audience, and motives.  There are some excellent, reliable, reality check-sites out there to verify information.  A few that I have used are:

American Cancer Society – “Rumors, Myths and Truths” – www.cancer.org/AboutUs/HowWeHelpYou/rumors-myths-and-truths. 

American Society of Clinical Oncology – “Cancer Myths” -

www.cancer.net/patient/all+about+cancer/cancer.net+feature+articles/cancer+basics/cancer+myths.

Quackwatch – “A Special Message for Cancer Patients Seeking ‘Alternative’ Treatments” –

www.quackwatch.org/00AboutQuackwatch/altseek.html.

Once you’ve identified your treatment options, go home and weigh the pros and cons of each.  Evaluate chance of recurrence and the potential risk of side effects compared to other treatments.  How will the treatments be evaluated?  What are the chances of cure or remission?  It’s a definite relief once you settle on a plan, but you must know that there will always be uncertainty.  Each of us is different and our cancers are different.  The most important thing is that you gather your information, make your decisions with confidence, and believe that you are making the wisest choice you can at that time.  TYG4e

SURVIVAL TIP FOR TODAY:

Even though my motto remains, “BE PROACTIVE – STAY POSITIVE – STAY STRONG!” a “positive-at-all-costs” approach can add an additional burden that you don’t need.  Everyone reacts differently to cancer.  This is your journey and you have no obligation to please others by the way you cope.

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! 

HONEY, DO YOU HAVE TO GO OUT FOR ANYTHING???

Food always seems to be a huge issue for folks on chemo.  You either don’t want to think about it, smell it, look at it – or all of the above.  That was me, especially after that lovely surgery in 2008.  Between anesthesia, pain meds, and every antibiotic in the PDR – then chemo on top of that – food wasn’t high on my list.  I’d always thought that I’d look more fit and chic if I would lose 20 or so pounds.  Well, let me tell you, 45 pounds in a short period of time only makes you look saggy, droopy, and frayed. 

I got lots of tried and true advice like, “Watch food commercials on TV and, when something appeals to you, get it quickly.”  Or, “Look at magazine and supermarket ads for ideas.”  Restaurant billboards are good sources also, and actually helped lead me to KFC! 

My poor husband, God bless him, really tried to work with me on this plan.  He would run and get anything I thought I could eat.  He went for McDonald’s milkshakes, Subway sandwiches, different nutritional drinks, apples, Checkers’ Fries, special yogurts, avocados (out of season), anything, anywhere!  He even went for a KFC chicken pot pie when I was sure that was “IT!”  I took one bite and said, “maybe I’ll finish it tomorrow.”  It looked even worse the next day!

They’re all great ideas and, hopefully, one will work for you.  But, what worked for me was slightly different. Why does that not surprise me? When the nausea would ease a little, I began going through old cookbooks.  I had always loved to cook and bake (and eat) and I had a ton of recipes.  Out of all the years of collecting, one recipe saved the day.  Old Fashioned Baked Egg Custard – VERY COLD!  It was easy to make and it always tasted good.  For 6 weeks, I lived on cold custard, WalMart nutritional drinks, over LOTS of ice, and an occasional apple.  The weight didn’t fly back, but it began to stabilize until my appetite returned.   It’s become a habit now to make a batch of custard after a chemo treatment.  I usually feel pretty good right afterwards, but I know I’m going to need it in a day or so!

I need to say something here about caregivers – those folks who will run out at all hours to get you whatever you want, or think you can eat.  They are angels sent from God – BUT they’re still human.  So, when your private angel brings you your tiny dish of cold custard and ice water and then heads to the kitchen to cook sausage and peppers, hot dogs and sauerkraut, kielbasa with onions, boiled crab legs, mussels in garlic and oil, or whatever else he or she is in the mood for, forgive them.  Try not to gag, go into another room, and remember this is the person who made that midnight run to McDonald’s for that McCafe Shamrock Shake that you smelled briefly, gagged,  and promptly tossed into the trash!

OLD FASHIONED BAKED EGG CUSTARD

3 eggs, slightly beaten

1/3 cup sugar

1 teaspoon vanilla

Dash of salt

2 ½ cups milk, scalded

Ground nutmeg

Heat oven to 350^o .  Mix eggs, sugar, vanilla and salt.  Gradually stir in milk.  Pour into six 6-ounce custard cups; sprinkle with nutmeg.  Place cups in rectangular pan so they are not touching.  Pour very hot water into pan to within ½ inch of rims of cups.

Bake until knife inserted halfway between center and edge comes out clean, about 45 minutes.  Remove cups from water.  Serve warm or chilled.  Refrigerate any remaining custards immediately.  6 servings – 150 calories per serving.

Also good with a few blueberries or blackberries dropped into the bottom of the cup before adding the egg mixture.  ENJOY!

SURVIVAL  TIP  FOR  TODAY:  The drug I’m currently on changes the taste of everything for about a week.  Even water tastes weird and the wine I love – what a waste!  Around day 5, acid indigestion sets in for 4 or 5 days.  Apparently there are quite a few drugs that do this.  TicTacs, Tums, Altoids, o/c antacids help only one or the other of the side effects and not for very long.  After much trial and error, I have discovered a great new product – at least for me.  Tums has come out with Tums Freshers.  They help with the awful taste for quite a while plus they’re an antacid.  2 for 1!!! Hooray! I’m not trying to be a product spokesperson.  I only want to tell you what I've found that works for me.