RECORD YOUR JOURNEY

I was e-speaking with a very dear friend the other day and somehow the subject of diaries & journals came up.  She said that she had always kept a journal until she got cancer – then she stopped.  I told her that I had tried to keep a journal of some kind many times over the years, but just couldn’t – until I got cancer.  Odd, isn’t it? But I may have the answer.   She has always been a much more disciplined person than I am.  No, that’s not a contradiction of everything I’ve said before.  I said I was an anal-retentive, organizational freak.  They really are different things.  Once again, I’m off topic. 

 I have often said that keeping a journal while dealing with cancer can be a very valuable tool.  Mine began after the “debulking” experience, mainly to keep track of temperatures, blood pressures, medications, and symptoms.  I was dealing with one infection after another, so this type of log was useful.  I also found that by recording my symptoms and reactions to certain treatments, I could better deal with the ones to come.  It became a sort of reference manual for recurrences but which gathered layers of dust during remissions.  It’s this reference manual that I recently reviewed for this blog. 

I know I’ve discussed some of the odd side effects that I’ve had over the years – fluent aphasia, hair loss, equilibrium issues (saying really stupid things, going bald, and tilting and tripping a lot).  My journal reminded me that there were lots of other byproducts of chemotherapy that were more common and equally disruptive.  So, for the sake of those of you who are currently going through the ultimate test of resilience – here are a few things I learned along the way.  I’m sure there is something here you can relate to.  Please remember, these are things that helped me – they may or may not work for you – and ALWAYS check with your physician first before trying anything new!  WARNING!  If you faint at the sight of a prescription pad, you may not want to read any further!  But please be aware that people with cancer deal with these and so much more every day. 

o   Doxil – those of you on Doxil, God Bless! I always thought I was pretty tough, but trying to “manage” the effects of that drug brought me to my knees.  I’m not saying it’s a bad drug – and I’m not saying that everyone has the same issues – I’m just saying God Bless you!!!

o   Whenever I had any kind of chemotherapy, it was followed – about 72 hours later – by abdominal pain.  I always felt the pain demonstrated the intelligence of those little cell-destroying drug molecules – they knew exactly where my cancer was and they headed straight for it!  Best thing to do is to sit down, put your feet up, and watch something mindless on TV.  Embrace the pain knowing that the little guys are doing their work. 

o   Acid reflux was never a problem until my most recent bout.  I tried all the recommended tablets, capsules, and prescription remedies to calm the dragon fire but, in the end, a good swig of ice cold Mylanta or the store’s brand worked better than anything else.

o   Vertigo has been an off and on thing with me, but when it’s “on” it’s really scary.  It just comes out of nowhere with absolutely no warning.  I’ve found that ice packs on my neck and wrists help shorten the event. 

o Ice packs also work well for PPE (Palmar Plantar Erythrodysesthesia) also known as hand and foot syndrome.  This nasty encounter was brought to me by the makers of Doxil.  Its first appearance usually looks like sunburn.  Then the affected areas can become dry, numb, tingling, and then they peel.  The soles of my feet have shed so many layers of skin that I actually slip on tile AND my carpet if I try to go barefoot.  My feet are like a pair of old sneakers that have lost their tread.  This symptom needs to be treated as soon as it rears its ugly head. At night I apply a thick layer of anything that is guaranteed to stain your sheets – covered by socks.  Not attractive, but effective.  Infections are always a possibility in open wounds, so please be alert.  A small crack turned into a mean infection which required postponement of my treatments for 2 weeks. 

o    If constipation is an issue for you (isn’t this a fun blog???) take whatever medications you use right after the treatment rather than waiting for the discomfort to begin.  The trick there is to know when to stop them.  One extra dose can overlap into the “diarrhea” phase and that’s just not a pretty site.  I always felt that this phase was a good sign, though – the evil drugs had done their job and were now exiting the arena.  But there always came an end to that phase too – the day when I headed straight to the Immodium!

o   I know a lot of you are sold on the Magic Mouthwash for mouth sores.  I know it’s great, especially if your sores are trying to migrate down your throat.  I always found warm water, salt, and baking soda worked for me.  Dry baking soda applied directly to the lip sores worked well, too.  I had one sore inside my bottom lip that was so big and so relentless that it actually left an indent in my lower lip for months.  I couldn’t drink a cup of coffee without a napkin under my mouth. My husband thought it was hilarious.  All liquids drizzled out through the not-so-little funnel.  I’ve heard of some weird side effects, but drooling was never listed on any information sheet that I saw. 

o   For some reason, cooking and especially baking do not go well with chemotherapy.  Granted, food doesn’t taste as it should for a while after treatments – BUT how does the drug make my cakes fall? my pies soggy? my muffins taste like YUK? I’ve been making Irish Soda Bread all my life, but during chemo it comes out like Russian artillery shells.  I finally gave in and enjoyed Publix bakery until the drug left the arena!

o   Anti-nausea drugs worked great for me, but only if I stuck to a strict regimen: 1 before bedtime, 1 as soon as my eyes opened in the morning and another about an hour before dinner (2 if I was doing the cooking).  Fortunately this only lasted for a few days after each treatment.

o    

      Fatigue – you can’t escape it, it’s part of the package deal and there’s only 1 cure – take a NAP when you feel you need it – and you will need it!!!

Some days, when all else failed, I knew that my nightly wine would soothe my depleted, beleaguered old body.  Now I’m NOT advocating alcohol as a treatment for side effects.  I drank wine before my diagnosis and I had my physician’s permission to drink it during treatments and I will continue to drink it until they pry it from my cold ... – you get the idea.  I like my wine!  It’s a very comforting, reassuring part of my day.  It always has been and it’s especially soothing during active treatments.  Once again, I’m not pushing alcohol, just talking about my own ways of handling this vile, cowardly disease.     

If anyone would like to share their “symptom management” techniques, please send them in.  I’d be happy to share them with our readers.  For now, remember BE PROACTIVE – STAY POSITIVE – STAY STRONG!”

KNOTS OF LOVE

August 21^st was a very special day for me.  Besides being my Dad’s birthday – he would have been 107 – it was also the 4^th anniversary of my major “debulking” (gruesome word) surgery.  The fact that I survived that surgery at all is a miracle - but that plus the fact that I'm still here 4 years later is due to some awesome people.  As I’ve said so often in my blogs, your team is critical to your survival.  You need to feel SAFE in their care.  Besides the medical professionals, your team also includes your family and friends who hold your hand, shield you from as much as they can, and occasionally stand behind you to give you a good swift kick when you need it.  I needed a lot of those!  I have been blessed with a phenomenal team for the past 4 years.  They have each played a huge part in my journey and I will be forever grateful for each and every one of them. 

Something beautiful and truly amazing has come out of the horrors of the past few years and I wanted to share it with you.  It also involves a “team” – a team of people, some of whom I’ve had the privilege of getting to know very well and some of whom I’ll never meet.  It began weeks before that nightmare on August 21^st, 2008. 

I had told a very dear friend in New York that I had been diagnosed with CANCER and asked that she please pray for me.  Unbeknownst to me, she contacted her sister in Ramona, California who belongs to a group called Prayers and Squares – a Prayer Quilt Ministry at Spirit of Joy Lutheran Church.  They put together the most beautiful quilt I have ever seen, saying that “this quilt was made for Kathleen with love, hope, and prayers.”  It was blessed and began its journey to me.   First, however, it made a stop in Pleasantville, NY so my friend could pray over it.  The quilt has threads running through it and the idea is to say a prayer and tie a knot in the threads.  The patch on the quilt tells you that “each knot represents a prayer that was said for you.”  Then it went to Cortlandt Manor, NY where my son and his family also said prayers and tied knots.  Next my daughter and granddaughter in Orlando did the same.  It arrived in time for me to take it to the hospital with me on the day of surgery. 

When the surgery was completed and I was assigned to a room, my quilt was there waiting to cover me with prayers.  It stayed with me, and on me, for my entire stay.  Everyone who came in the room admired it and asked what the knots were for.  As soon as I told them, they all wanted to tie a knot and pray for my recovery.  The most touching moment for me was when my heroic, superhuman surgeon came in said he had heard about the quilt and could he please tie a knot, too. This quilt has covered me during every hospital stay, every chemo session, and many times when I just needed the comforting weight of its hundreds of prayers.  

While I was at home recuperating and trying to fight off nausea, a variety of infections and home health nurses, I began to form an idea.  Besides making my husband very nervous – my ideas usually involve a major project for him – it started to take shape.  Maybe I could really do this – with a lot of help. 

I’ve knitted and crocheted all my life – my family, friends, neighbors, and odd acquaintances will verify that.  I just love to make afghans, shawls, baby blankets, baby sweaters, hot pads, dish cloths, scarves, hats, stuffed animals, doilies, pretty much anything that can be made from yarn.  Since there is just so much two people can use in one house, guess where the overflow went?  That’s right – my family, friends, neighbors, and the odd acquaintances.  I now saw an outlet for these projects.  Shawls and throws could take the place of a quilt and tassels could be added for the knots.  I made two samples and brought them to the pastor of our church in DeLand.  I explained the history of my quilt and told him that I would like to specifically target people in the parish who had recently been diagnosed with a serious illness or were facing a serious physical challenge; people who were frightened by what they were about to face; people who had a chance at a miracle; people who needed extra courage and strength to trust in God’s plan.  His main concern was that once one person received one of our shawls, everyone would want one and we wouldn’t be able to keep up with the demand.  He then promptly asked if he could have my samples.  He said he had just visited two of our parishioners in the hospital that day who fit the criteria perfectly!  

And so, in January of 2010, K nots of L ove – a Prayer Shawl Ministry  was born.

I explained to the pastor that I would like to put an ad in the bulletin asking for knitters and crocheters.  I was sure that there must be other women out there whose families were overrun with afghans and scarves and such.  Maybe they would like an outlet for their craft and a chance to use their talent to help others.    Our first meeting was small but highly productive.  We all bought our own yarn in the beginning, now we have many patrons who donate yarn and money for yarn when they can.  When completed, the shawls are blessed, packaged in tissue and a gift bag and enclosed is a letter explaining what it is, how it was made, and the purpose of the tassels and Knots.  We encourage the recipients to ask their family, friends, medical personnel, etc. to say a prayer for them and tie a knot.  

The group has grown and has now taken on the characteristics and importance of a second “team.”  Everyone is using their amazing talents for the good of others.  Our criteria have been modified and our outreach broadened.  We now provide shawls, throws, and chemo caps to six cancer centers, two hospitals, a NICCU unit and a pediatric unit, as well as the parishioners of our parish.   This special “team” has always risen to the challenge Fr. Tom placed upon us.  The supply meets the demand – much like the story of the loaves and the fishes in the Bible.

It’s mind boggling to me to realize that this all began with a call to another special “team” in Ramona, California on my behalf.  My husband’s concerns about my “idea” involving him has come true, but he has never complained.  He helps with the packaging and distribution and has tied thousands of knots in hundreds of shawls.  He takes pride that not one shawl leaves here without his prayers for the recipients. 

As of August 7^th, 2012, this talented, compassionate and generous group of women – and a few young men – has made it possible for us to distribute 613 shawls and throws and 214 chemo caps – and we’re still going strong.   God has always been the CEO of this group.  May He continue to put His blessing on the products of our work as well as on the hands that made them!    

               

             Knots of Love are Prayers ~

                   the Prayers are sent to God ~  

                        God gives us miracles in return!  

"IT'S A WURLITZER"

Most of you are too young to remember the old Wurlitzer Organ Commercials.  They would show some outrageous automated feature of their new electronic organ and then end with, “It’s a Wurlitzer!”  

The Wurlitzer Company was started in Cincinnati in 1856 by Franz Rudolph Wurlitzer. From importing musical instruments it turned in the 1880s to marketing automated instruments, including disc-changer machines and coin-operated pianos.

The "Mighty Wurlitzer" theatre organ was introduced in 1910.  Among Wurlitzer's electronic instruments, beginning with electric reed organs in 1947, the most important have been the fully electronic organs, especially the two-manual-and-pedals spinet type (from 1971 with synthesizer features) for domestic use.  The Wurlitzer Company came to an end in 1988, when Wurlitzer was bought by the Baldwin Piano Company which stopped placing the Wurlitzer name on pianos and organs at the end of 2009.

I’m sure you’re wondering what this has to do with me, CANCER, recurrence, remission, etc.  Well, nestled in a sunny corner of my home, surrounded by baskets of well-worn sheet music, one of my most cherished possessions resides--a Wurlitzer Omni 4000 Keyboard Computer with the Orchestrator and Swingin' Rhythm II, accurate chord recognition, and vivid solo and ensemble sounds.  It has seen me through some of the very worst times of my life, and some of the most wonderful.

When I was a child, piano lessons were not foremost on my list of favorite things.  I became an expert at developing new and exciting diversionary tactics to avoid practicing.  Although my Mother’s patience abounded, the correct notes to "When the Red, Red Robin Comes Bob, Bob Bobbin' Along" eluded me. Though she tried valiantly to pass her marvelous gift of music on to me, I turned a deaf ear.  Years later, when my mother was gone and the piano had been sold, I regretted my inattentiveness.  As my love for music grew, so did my envy of those who could make the music.

Lo and behold!  In 1987, my fairy godmother appeared looking very much like Fredda, the owner of Fredda's Organs and Pianos, and offered to grant my one wish.  With little more than a wave of her magic wand--and a check made payable to her in the amount of $8,995 plus tax--my wish was granted.  The Wurlitzer Wizard (with a slight assist from modern technology) has enabled me to create and re-create the music of my dreams.

Over the years, it has carried me back to my childhood.  Mysteriously I have been transported to a turn-of-the-century brownstone in Brooklyn, New York.  The year is l952, and I am sitting on the old wooden piano bench beside my mother.  Sitting shoulder to shoulder on that oak bench and positioning my fingers on the ivory keys, I can clearly hear my mother's voice.  "Gently, Kathleen!  Gently! Strike the keys; don't pound them!" 

At other times my Wurlitzer has transported me to a gothic church of my youth.  Strains of long-forgotten hymns reverberate from an archaic pipe organ.  Although this regression is physically impossible, emotionally I am filled, once again, with the wonder and enchantment of that heavenly music.

Often, while playing an "oldie but goodie," I am once again surrounded by departed loved ones in the midst of a holiday sing-along.  I can hear my dad's voice singing words never written by the lyricist, but words which he preferred.  My father-in-law is doing his best barbershop-quartet rendition of the tune, despite the rest of us amateurs.  And, of course, there's Bucko, my fun-loving brother-in-law, who keeps requesting "Danny Boy." Spending ten minutes at my organ with a seasonal songbook is a sure-fire method of getting me into the holiday spirit.

This electronic wonder has also doubled as an animal behaviorist.  Whether I played poorly or magnificently, loudly or softly; whether I played a march or a dirge, soft rock or hard metal, my devoted dog, Holly, would promptly go into a trancelike state. She may have been yipping and yapping at neighborhood children, or treeing a squirrel in the backyard, but when my partner in music sounded the first note, Holly would quietly meander over, sprawl across the foot pedals, and sigh in ecstasy.  My organ definitely "hath power to soothe the savage" Jack Russell terrier.  Sometimes when I play today, I can still see her lying there, sighing and utterly content.

This lovely oak cabinet, filled with eighty-eight keys deployed over two keyboards, numerous buttons, switches, bells, and whistles has always been a sedative when I'm restless and an outlet to vent my anger.  It has been a buoy for my sinking spirit and a conduit for my imagination.  It has helped me weather many a recurrence and celebrate the amazing remissions.

There have been several occasions when the many voices and moods of my new-found friend have so thoroughly enraptured and engrossed me that hours have passed without my noticing.  This time warp feature of the Omni 4000 has come in especially handy when I have been anxiously awaiting a doctor's phone call with test results, or when my children were driving or flying home in bad weather. 

It's plain to see that I love my organ.  Not as I love my husband, or my children, of course, but rather as I love the aroma of turkey roasting on Thanksgiving morning and the cozy embrace of my fuzzy, green bathrobe on a cold, wintry night.  This marvelous instrument is the embodiment of my heart's desire, my fondest hope, the wish I made upon a star, the melodic extension of my soul.  Is it any wonder I love it?  After all, "It's a Wurlitzer!"

SURVIVAL  TIP  FOR  TODAY:  Find something in your life to transport you and support you – a joyful distraction! 

What Do YOU Do While You Wait?

I just spent the past four weeks waiting for another CA-125 test to be completed.  Thursday, the phone rang – the number was another “bump in the road.”  It’s okay - we’ll deal with this one as well.  But it got me thinking about how much waiting I’ve done in my lifetime.  I swear it’s been more than half my life -- waiting for a teenager to get home -- waiting on line in the supermarket -- waiting to see a doctor -- waiting for the phone to ring -- waiting for critical test results.  I’ve been marooned in so many waiting rooms in so many medical facilities, I feel I’ve become a connoisseur of medical environments.  Some facilities and personnel tend to forget that our time is just as valuable as theirs.  I’ve spent so much time in one doctor’s waiting room that I swear his motto must be “Time heals everything.”

So, what do you do?? 

I’m sure you’ve noticed the increase in TVs in medical offices.  The channel that’s on will give you an immediate clue as to what type of doctor inhabits this office.  If Dora is Exploring, he’s a pediatrician; if C-SPAN is on, he specializes in some part of the male anatomy; if it’s the View, the patients are female; and if HBO is on, he/she has no concept of the word punctual and his staff is most likely six months behind in their insurance submissions. (But they’re great at movie trivia!)

A cardiologist I went to ONCE actually did show HBO movies in his waiting room.  Seriously!!!  After watching an Eddie Murphy movie for 45 minutes, I was shown to an examining room where I was asked to undress and wait for another thirty-seven minutes, in a freezing cubicle, in a drafty gown, without HBO!

The décor of the waiting room always interests me.  Flowers and trees are supposed to be calming to patients, or so I’m told.  I also think they’re a good indication of the doctor’s financial health (does he have Dracaena Marinates and Pygmy Palms? or lowly geraniums??) and of his medical competence (have aphids taken up residence or is everything wax and covered in dust?)

Diplomas can be interesting reading while you wait – Undergraduate, Medical School, Fellowships, Board Certifications – as fascinating as these may be, I would prefer to see his/her GPAs.  Some doctors are getting a little carried away with this framed reading material.  I swear I once saw an award for excellence in Hall Monitoring in Junior High.  Granted, I think it was hung in the hallway, outside the restroom – but still!

Pamphlets and leaflets must serve some purpose in doctor’s offices.  Maybe the physician or a nurse might give a specific pamphlet to a certain patient because of a particular condition.  That’s understandable, but some offices really go overboard.  An oncologist I went to many years ago was a wonderful doctor and such a happy, cheerful person.  His waiting room, on the other hand, could depress Robin Williams.  It was filled with rack after rack of pamphlets detailing the symptoms and warning signs of every sub classification of cancer known to modern science.  After a period of waiting in that room, most patients are convinced that if they didn’t have it when they came in, they will by the time they leave. 

A Vero Beach reconstructive surgeon whom I know has stacks of pamphlets neatly arranged on a seventy-five-year-old pie-crust table.  These pamphlets cover every type of plastic surgery from face lifts to tummy tucks to hammertoe correction.  I always spent my time making a mental “wish list” while I waited there.   

Psychologically, aquariums can be very calming but only when properly maintained.  There’s nothing calming about a dead fish floating in a glass coffin.  The management of a local Florida hospital learned this the hard way when a young child, whose mother had been injured in an accident, began screaming uncontrollably.  He had witnessed a dead angelfish being eaten by one of its tank mates.  My current chemotherapy treatment center has a huge aquarium – the cleanest and prettiest I’ve ever seen.  I have never even seen one of those fish poop!  There is something surreal about the cleanliness and bright colors of the fish – but it’s gorgeous as well as distracting!

Seating arrangements are often very telling.  If you see thirty-five chairs in a single practitioner’s waiting room, I’d go home and get my pillow and a very long novel.  Why would one doctor feel the need to supply seating for a full day’s patients at one time?

My favorite seating arrangement is what I call “airport terminal style.”  This design is popular in large group practices where many doctors share one communal waiting room.  There are no magazines, TVs, or pamphlets – just good, old-fashioned people-watching.  It’s enjoyable as well as cost effective.  The time passes so quickly that most patients don’t mind the wait.  Of course, this method does have its drawbacks.  Since it’s often impossible to hear your name being called in this huge amphitheater, quite a few appointments are missed.  This is not the recommended arrangement for seriously ill patients. 

Medical journals have said that many doctors are becoming acutely aware of patients who grow anxious, stressed out, and irritated by being kept waiting.  From my experience, I think it’s more likely a few doctors who are mildly aware of their patients’ acute irritation and stressful anxiety. 

Doctors should take their lead from my local home-town dentist.  His office is decorated with colonial couches, afghans, country wall hangings, and TVs in each treatment room showing slideshows of magnificent flowers and birds.  His receptionist does not isolate herself behind frosted-glass panels, and she not only knows the rules for realistic scheduling – she actually adheres to them.    

There is a term used in Emergency Rooms – LWBS.  It’s usually seen scrawled across a patient’s chart.  It stands for Left Without Being Seen.  It means that someone thought a three hour wait was a bit much, and, besides, they had found the missing finger and the bleeding had stopped by then.  I’ve left a doctor’s office once or twice because I refused to wait any longer.  I wonder what was scrawled on my chart. 

According to the principles of medical ethics set forth by the American Medical Association, physicians are expected to serve humans with full respect for their dignity and gain the confidence of their patients.  Waiting for hours in a freezing room with a torn copy of Soap Opera Digest and three decapitated Barbie Dolls, while four nurses (and most probably the doctor) giggle behind their frosted barricade does not bolster my confidence nor does it foster my dignity. 

Now this is a test – pay close attention!!!

The next time you enter a doctor’s waiting room, examine your surroundings.  How are the chairs arranged – perimeter fashion? Back-to-back? Possibly airport-terminal style?  Is anything living in this office – plants? trees? fish? mold?  Are there any diplomas on the walls? What type of magazines are lying around? Is there a TV in the room?  What’s on?

This simple exercise should accomplish two very important things:

1. Attentive, enlightened patients become discriminating, selective consumers.  Doctors will no longer  be able to stick us in a freezing cubicle with a gown the size of a postage stamp and an old, dog-eared, germ covered magazine, and expect us to wait patiently and quietly.

2.   And, last but not least, I’m hoping that you will become so engrossed in this assignment that you’ll forget to worry – which is really what we ALL do while we wait!

SURVIVAL TIP FOR TODAY:  While you’re waiting, try not to let worry absorb you.  The vast majority of things we worry about NEVER happen!