time_management_software

I have a good friend who has a successful accounting firm.  We went to college together and I had the pleasure of working with him for a while.  He is what you would call a “go-getter” and well, patience is not his virtue.  One summer long ago, he gave my brother a job.  My brother would tell tales of my friend asking my brother for a report and anxiously waiting by the printer for the pages to spit out. “Brian, I’m waiting by the printer.” This mantra was my brother’s cue to get that report to him – pronto!  Jack and I use the phrase when one of us needs something from the other….pronto!

Waiting is not my strong suit either.  And waiting when you have an illness can be stressful and at times, agonizing. I read a blog post written by Susan Gubar a blogger who is writing about her journey with ovarian cancer.  What struck me was her phrase, “the oddity of cancer temporality.”  She went on to say, “Every facet of cancer and its treatments transforms time, from its smallest to its larger increments. Of course, waiting takes the most time in the smallest units. Its ticktock can be interminable, especially when you are anxiously waiting for test results or fasting for a dreaded operation or when you are going through preparations for a procedure requiring that you drink vials of what looks like Kool-Aid every half-hour for two hours. Any period spent in the hospital requires killing time. Time, in fact, sometimes seems to stop, to stand still.”

Time is something we cherish, but when you have an illness, time isn’t always your friend, or on your side, or in a bottle…  Time can be cruel, especially for people dealing with pain.

It’s a dichotomy – people dealing with illnesses want more time, but the treatment and the waiting can cause the person to wish time away.  Waiting is the root of the evil;  waiting for the doctor to return your call, waiting for the treatment instructions, waiting while prepping for a treatment, waiting in the waiting room, waiting for test results,. Waiting. Anticipation. Time.  We want time to fly so we know our next steps or just find closure so we can move on.

Bloggy Bloggerson

blog

A lot of time has passed since my last blog post. As I mentioned in earlier blog posts, I don’t fancy myself a writer.  I discovered that capturing my experiences was extremely helpful in my recovery.  In my hypothyroid haze last year I discovered the gift of “blog.” When my meds kick in, my right brain seems to turn off, so no posts since then.  But guess what folks, “I’m a little bit hypo, I’m a little bit rock and roll” so I feel a blog coming on….

It’s a sticky hot June day and I am 24 hours away from my final Radioactive Iodine scan.  The I131 scan is part of my thyroid cancer treatment protocol and hopefully after tomorrow I don’t have to do anything else except one more blood test in September before I am officially given the “all clear.”  The scan which sounds like “Pu-239”, the HBO movie about selling uranium, is a full body scan designed to find the sneaky bastard cancer cells that like to hide out in thyroid hormone cells.  I had my initial scan in April 2012, then my doctor prescribed one in November 2012, and now a year+ after my successful first treatment, my last scan. Fingers crossed.

If I knew you were coming I’d a baked a low iodine cake.

Cake

Three separate I131 scans – is this a recipe for disaster? Well as my Endo and Radiologist say, it’s part of the treatment, so I have to do it.  Or do I? This is a controversial topic for my partner Jack and me, because my last scan in November was totally clean – I mean nothing – the neck area on the scan picture was pitch black.  If any cancer was present as my radiologist said, “your neck would have lit up like a Christmas tree.”  It was a beautiful thing.  Jack felt that I was done.  Happy day!  Buuuut, another scan is required in this treatment protocol – within one year or so of the initial treatment scan.  Jack isn’t pleased.  He feels that all the extra radiation from three scans is too much and may cause other problems. I understand – Jack is being the wonderful supportive partner he has always been during my thyroid cancer ride. I don’t like messing with my body either, now that I have it calibrated the way I want it. However, I want to follow the protocol and have the official clearance. I mean, I didn’t go through all of last year for nothing.  I want proof that after a year and some, I’m still cancer free.  Then I can move on.

 

Radioactive Iodine I131 Scan

Total Time: 3 weeks

Prep Time: Diet 2-3 weeks, leading up to scan 1 week

Cook Time: 40 minutes

Yield: One healthy patient

Ingredients

  • 1 blood test
  • Three weeks of a low iodine diet
  • 1 week without thyroid meds
  • 2 shots of thyrogen
  • 1 dose of radioactive iodine
  • 1 scan
  • 1 blood test

Directions:

Step One: Take first blood test. Sit in waiting room of hospital until called. Go into little room where a nurse will draw your blood and that of a small child sitting in the chair opposite you. Smile at child to show there is nothing to worry about.  Watch as nurse tries to find your vein and then tries again and then, “ah-three’s the charm” again.  Noticing the child beginning to squirm, smile once more, wiping sweat off your upper lip with left hand. This initial blood test is to check the T-4 and T-3 thyroid hormone levels at the beginning of the process.

Step two: Go on low iodine diet (LID) to deplete the body of as much iodine as possible which will help increase the effectiveness of the radioactive iodine scan. The premise is that when the RAI pill is administered the thyroid hormone cells will suck up the iodine because the body has been so depleted.  The diet is for a short time – 2-3 weeks before the scan.  Approximately 50 mcg of iodine a day is allowed.  This means stop eating.  No really, just stop eating because iodine is in like everything except for wine or vodka.  While eating isn’t allowed, drinking is encouraged with this caveat. “If you consume alcohol when hypothyroid, remember that your body’s metabolism is slowed down and that you may react differently than you usually do. Therefore, many people prefer to consume smaller amounts of alcohol.” Jack calls me a “hypo-alchy” or a cheap date. Note: www.thyca.org  is a thyroid cancer patient’s dream.  They have the low iodine cookbook which includes hundreds of recipes and tips and techniques to get you through this part of the program.  http://thyca.org/Cookbook.pdf)

Step Three: Go back to hospital for two consecutive days of Thyrogen shots. Thyrogen is a protein mix that is similar to thyroid hormones which allows the patient to avoid 4-6 weeks of hypothyroidism during the scan prep.  Sit in waiting room for 40 minutes while being told that there is no one to administer your shot because it is a busy time and “there’s budget cuts, you know.”  Sit with iPad and do work grumbling that you have a PPO and feel that administration shouldn’t get in the way of your treatment.  Get shots. Get woozy.  Side effects – you will feel very, very sleepy…

Step Four: After two days of Thyrogen, go back to said hospital and take your radioactive iodine pill.  After a night of fasting: no food & water, find new administrator at desk, new rules and new area to wait.  A sweet, but exasperated administrator says, “Just wait here Laura.  You know – everything is moving online. Your order needs to go through the system.  Your technician will be out when she receives your order, electronically.”  Um, you try to swallow, “My name isn’t Laura, that’s my sister – do you have her information up?”  “Oh, silly me, I’m just a little tired, don’t worry everything is electronic oh… here you are!”  As you wait, you try to pool saliva in your mouth to relieve the dryness. You tell yourself you are not on a desert island – you just haven’t had water in 8 hours.  Survivor mode takes over; you think tart lemon and continue to shore up spit.  The magic of online processing happens, and your radiology technician pops out just as you are about to drink out of the calming water feature in the waiting area.  She whisks you in to her treatment room.  With special gloves she asks you to take what looks like a slowly pulsating cup. It contains the radioactive iodine pill.  The radioactive iodine pill is a tracer amount to help the body suck up all the remaining thyroid hormone because it looves to eat iodine – think Pac Man. The full body scan captures where any potential cancer cells may be hiding within the remaining thyroid hormone.

Step Five: Go home and be radioactive for 48 hours until the scan.  According to the technician, reactions or side effects caused from radioactive materials are uncommon; on rare occasions, mild effects may occur.  Unless you have an allergy to iodine.  If your mother has said allergy, perhaps the tightness of chest, the hives breaking out on your arms and chest and the inability to swallow may be a point of worry.  Call the technician and listen as she calmly tells you that you may need Benadryl if symptoms persist, but she is not a doctor, so call the doctor if it worsens.  Your mother, who happens to be in the area doing errands and made you some meatballs and sauce to freeze for when you can eat again, drops by and confirms your fears.  She makes sure you take Benadryl and proceeds to call you every 30 minutes until the symptoms lesson.  Vow never to do this test again.  Post on Facebook how sad you are and get a nice “pick me up” from your friends.  Drink a glass of red wine one of your friend’s brought you – a mixture of red wine and chocolate.  Sleep soundly and wake up next day feeling better.

Step Six: Flush the radioactive iodine from your system or it will congregate in the intestines or stomach.  Drink lots of water and try not to go out and weed your yard in 90 degree weather under a hot sun. Sweating what you think looks like green, glowing perspiration may cause you to drop what you are doing and take a Silkwood shower.  Wash out the bathroom and take your radioactive sweaty clothes and put them in a bag and bury it for 80 years.  Try not to sweat by sitting in front of a fan because your air con doesn’t work. While the radioactive iodine is actual radiation – it is a tracer amount.  So the protocol you have to follow with the RAI treatment – which is a significant amount to ablate a cancerous area – is completely different.  Some precautions should be made with the tracer amount because the radiation is expelled by urination and other bodily functions.  So, stay out of crowds, wash down the shower, flush the toilet twice, sleep alone, wash clothes and dishes separately, don’t kiss your partner, but feel free to kiss your pups, radiation takes about 15 years to cause any issues and by that time, poor pups will be gone.

Step Seven:  Get your scan. Go back to hospital, this time with your kind partner who offers to drive you so he can be there to see the “pitch black” neck area on the scan picture (even though he loves Christmas.)

Step Eight:  Take final blood test which checks the antibodies and corroborates or is the back up to the scan.  High levels of antibodies may mean something is up.

Step Nine:  Wait for good news.

Oh, doctor, I’m waiting by the scanner…

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mag·ic/ˈmajik/

Noun:  The power of apparently influencing the course of events by using mysterious or supernatural forces.

Like many of you I live my life at an accelerated pace.  Working, building, never stopping, never sleeping – a room zoom, zoom.  My mantra was, “next year.”  Next year I will have more money.  Next year I will have the career I’ve always wanted.  Next year I will take that vacation to Paris… Working, building– a room zoom, zoom.  Until one day in February 2012 I woke up and realized I was 49 and over half of my life was over.  (Did you know that one hundred years ago the average lifespan was 49?) In February 2012 I turned 49 and oh yeah, I had cancer.   A room zoom, STOP.

 

When I was a kid, I watched a TV show on Sunday mornings called, “The Magic Door.”  I had no idea at the time, but it was an educational series aimed at providing outreach to Jewish children in the Chicago area.  “Open, come open, the magic door with me, with your imagination there’s so much more to see.”  As a young catholic girl, I didn’t understand the religious connotation; I just loved the show because the main character – a little elf named, Tiny Tov, would take us on a fun ride into a magic world.  He would sing, “Ah room zoom zoom, ah room zoom zoom, gily gily gily gily gily a sa sa. Come through the Magic Door with me; just say these words and wondrous things you’ll see.”  To this day, I remember the theme song that opened a portal to “wondrous” things…

 

 

September is Thyroid Cancer Awareness month.  For me it’s also my 6 month check up, so I am taking this time in blogsville to reflect on my experience. You are all going to think I’m crazy – but my “magic door” opened the day I found out I had cancer.  Good grief, how could cancer be magical, you may ask?  Well, everything about my experience was influenced by mysterious or supernatural forces.  The timing of my illness and recovery, the physical changes I experienced, and the people in my life, all changed me for the better.

Ok, you still you aren’t buying it…well, here it goes, “Ah room zoom zoom, ah room zoom zoom, gily gily gily gily gily a sa sa….”

Sun, sun, sun here it comes…

I have always dreaded March. The weather is notoriously ugly in Chicago – snow, cold, rain, dark, dreary.  March is ruled by Mars – the energy is angry, fiery, frustrating.  I figured if I was going to recuperate after my thyroid cancer surgery, March was the time to do it.  Ugly weather, angry people, it would be a great time to hibernate and recover.  Who knew that March of 2012 would go down in history as the warmest March on record for the Chicagoland area?  Who knew that each day of my recovery would be warm, sunny, and gorgeous? Who knew that each day would be filled with blooming flowers and trees, the grass turning from brown to green; birds chirping, bees buzzing?  Who knew the equinox and solar eclipse would pass with such grace and beauty – warm breezes blowing the new seasons in. It was idyllic.

I experienced each day fully.  I couldn’t wait to get out of bed and feel the warmth of the sun on my face.  I know this crazy early spring helped my recovery.  It was a spring awakening – both for my spirit and my body.  Timing is everything.  The cosmos, the weather patterns, my surgery date – kismet.

Slow ride, take it easy…

Ahem, I know that Foghat is not the best use of symbolism for this part of my journey – the phrase yes, the connotation…mmmm, not so much.  (Annnd WOW, after reading the lyrics to Slow Ride, I instantly had a hot flash…)

“Slow Ride” is more indicative of the slow hypothyroid journey I experienced.  Hypo-hell or hypo-haze phase was pretty wild.  It was uncomfortable, I felt miserable, but I tell you, I was my most creative during my “slow ride” into exhaustion.  My right brain kicked into high gear, I didn’t sensor myself because I felt high all the time.  As a youngster, I wasn’t the type to “turn on tune in and drop out.” Drugs were not my thing and I am just too goofy when intoxicated, so I never gave myself the opportunity to write as Baudelaire, Cocteau or  even Stephen King did…under the influence.  My influence was the lack of thyroid hormone.

I started my blog before my cancer experience, but continued on during my hypo-haze phase.  I felt free when writing – words flew from my fingers.  It was exhilarating.  I never in my life thought of myself as a writer and I still don’t, but I felt a sense of creativity I haven’t felt since I was in my 20s and acting.  Sure, I was “crawl on the floor” tired, forgot what I was saying mid-sentence, and gained 20 lbs, but my mind was free.  What a gift.  When the Synthroid kicked in and my energy levels returned, so did my left brain.  The details, the ‘go, go, go”, the in-the-weeds thinking. I stopped writing.  I couldn’t.  I felt my right brain, creative side click off.  It made me very sad.  I miss that time.  I know what you are thinking, especially if you are going through the hypothyroid experience now, I’m stark raving mad! But it was pretty incredible.  I am now trying to find ways to replicate the experience minus the fatigue, memory loss and weight gain. I started yoga again and meditation to hopefully tap into that right brain creative side again.  Hypo-hell….it was sooooo worth the ride!

Here’s my disclaimer:  Being hypothyroid is not a ride, it isn’t pretty, and to anyone out there experiencing it right now, it can be debilitating and frustrating.  I’m just sharing my personal experience. Nothing more.

 

Cause you’ve got to have Frieeends! La la la la la la la la!

I’ve said this before in my blog, but I can’t say it enough.  Friends and family helped me through this experience.  Friends and family who sent me flowers and cards, and gifts and soup and Shamrock shakes and straws and Jello and pudding. Friends who came over with Hamburger cakes and laughter and scarves.  I “heart” each and every one of you!!!  The LOVE of a circle of friends is a powerful healing tool; more powerful than any drug.  When I felt tired or scared or lonely or anxious, my friends and family were there for me. The circle of healing and love continues now.  We hold each other up, keep each other safe, and laugh like there’s no tomorrow.  ‘Cause, life is very strange and well, finite.  You never know.  You just never know.  I will cherish each friend and family member to the end of my days.  My cup runneth over!

What’s next?

Well, with any cancer experience there is follow up.  Today I had my 6 month doctor’s appointment with Dr. “I love when you call me Spunky.”  He is so elusive, because endocrinologists are so very busy.  They deal with complex systems and disorders like diabetes (which is almost an epidemic), thyroid, menopause, and metabolic disorders of all kinds, so they are in high demand.

Dr. “I love your last name because I am a scientist and we love minerals – your name sounds like Kryptonite” (I didn’t quite know how to take that, but I took it as a compliment – because it means I am a natural weakness for Superman….watch out Jack…) talked with me for about 40 minutes – which was amazing!!!  Seriously.  Amazing.  He listened to me and really heard me – he never dismissed me and took everything I said seriously. Dr. “Ok,  I’m in love again” (he was sort of on my s#@t list during my last scan debacle, but he made it up by being soooooo cool today) wrote up two new prescriptions, more blood work, an ultrasound and a Thyrogen Stimulated I131 Whole Body Scan.  (I will talk about all of this in my next blog posting for anyone dealing with thyroid cancer.) Most of what he wrote is standard stuff for follow up care.  Buuut, now,  I am officially a money pit.  So many tests, worthwhile tests, yes, but geesh, poor my health insurance…poor my bank account.

It has been six months since my Thyroid cancer entered my world and I am back to “working, building, never stopping, never sleeping – a room zoom, zoom.”  And I am grateful for each and every stressful, crazy and yes, magical bit of it.  I am healthy and alive!  February 2013 is my…gulp…big 50.  As I get up over that hill, I will of course freak out because I am 50 for cry eye, but I will take comfort that I made it through an illness and got to the other side in one piece (well, the thyroid gland is sort of small – I don’t miss it, I guess…)

Thyroid Cancer, a place I knew little about until now.

50.  A place I know nothing about.  Hmmm, I hope they have hamburger cake there…

 

cliff·hang·er/ˈklifˌhaNGər/  Noun:  An ending to an episode of a serial drama that leaves the audience in suspense.  A story or event with a strong element of suspense.

My first true experience with a cliffhanger was the 1980’s Dallas episode, “Who Shot JR?”  It was shocking and exciting to try to guess “who did it?”  But the cliffhanger that really got me was the crazy shoot out at Amanda Carrington’s wedding on Dynasty when everyone was left in a heap on the floor in Moldavia.  It was very Shakespearean. Who died, who made it out alive???  We had to wait an entire summer into the fall for the answers. It was agony.

Cliffhangers are everywhere now – and it’s not just end of season cliffhangers, reality shows use them before every commercial break.  It’s expected; Who will be chopped?  Who will be the next Amercan Idol, Who will be the next Top Chef?  The Biggest Loser always uses the cliffhanger during the weigh in. I’m not proud of it, but I have jumped off the couch over the table to grab the remote from Jack if I think he won’t turn the channel back in time to see the results.

Cliffhangers were necessary back in the 80’s-90’s because studios were always going through contract negotiations at the end of seasons, so you never truly knew who was coming back until the first or sometimes 3rd or 4th episodes.  Cliffhangers now are a mechanism to keep the viewer engaged.  With TIVO and DVR and sooo many program choices, producers/directors need to keep the audience interested.  Cliffhangers turn people like me into furniture leapers who tackle their loved ones for the remote to get the channel back.

I am not a huge fan of the cliffhanger – I like closure.  I don’t like the agony of not knowing and having to wait an entire summer for which character is coming back or which character didn’t get enough money in the renegotiation.  I find myself angry and frustrated, but then I sort of resign myself to waiting it out.  When the TV show is back on in the fall, I sometimes don’t watch the first show out of spite.

Unfortunately with illness there is always a cliffhanger.  Particularly with cancer, you never quite have closure.  You may have opportunities when you can celebrate a victory, but you are always waiting for the results of that next blood test or scan.  You are always waiting to see what’s on the horizon.

When last you left this heroine, victory was mine!  Although the radioactive scan results were inconclusive, the thyroglobulin blood test came back very low, which meant no cancer was present and my rock star ENT said that no radiation was needed.  Huzzah!  Celebration!  Eating cheese and drinking wine!  Most importantly- I was able to start taking the little blue pill – Synthroid!!!

On the same victorious day,  my endocrinologist, Dr. “I’m so busy, but he called me spunky” left me a voicemail at 9:45 p.m. ( I must have fallen asleep after my celebratory glass of wine and piece of cheese.)  The voicemail said he agreed with my ENT that I didn’t need radiation and my thyrogloblin test was fine, but he wanted to discuss the other blood test results.  He was going on vacation for the next week and a half and would be back on 4/16 and I was to call him then.  It was April 5.  Dang it – another cliffhanger!

Ok, I calculated, 11 days and then I would be able to find out what the heck Dr. “I’m so busy, but he still left a voicemail message” wanted to tell me about my blood test results.  What could it be?  It obviously wasn’t too serious, but it was something otherwise he wouldn’t have left me the voicemail message.  Was I reading too much into it?  Dang it. What did he want to tell me?  I experienced the agony I felt after that Dynasty episode.

Knowing I had to wait, I just started living my life.  I took my Synthroid each day, slowly coming back “online.”  My energy perked up incrementally.  My mental acuity came back – I was slowly emerging from the hypo haze.

April 16th came and I called Dr. “I’m so busy” – he wasn’t available, so I asked the nurse to have him call me.  Two days passed and no return-call.   My imagination ran wild, I created all these crazy scenarios in my mind.  I carried my cellphone into the bathroom with me in the event Dr. “I’m so busy but maybe too good for me” called.  I called again, this time really peeved.  No response.  I started to feel like Glenn Close in Fatal Attraction, “Well, what am I supposed to do? You won’t answer my calls, you change your number. I mean, I’m not gonna be ignored, doctor!” I got to a point where I started looking for other endocrinologists online.

Then the phone rang.  Dr. “I’m so busy, but genuinely apologetic for taking soooo long to get back to me” gave me my long awaited test results.  It appears that I am healing nicely, the thyroglobulin test was good, but the other blood test was abnormal.  The body produces antibodies to fend off infection and tumor development.  They use this blood test as a tumor marker.  The test was abnormal – the numbers were high, buuut, not so high that he was worried (thus taking soooo long to get back to me.) Just high enough to peak his interest.  I have to have another blood test in June and if the antibody level has increased dramatically, we will address it then.  So, another small cliffhanger.

Although I have experienced great victories with my thyroid cancer, I realized that there may be more cliffhangers.  There will be scheduled blood tests, scans and follow up appointments; changes in antibody levels, hormone levels, tweaks to medicine and the potential for more tumors.  Closure isn’t part of the vocabulary.  Recognizing this continuum, I have to change the way I view my cancer.  I know now that it is a journey with many stops versus a single trip.  I know I have to celebrate the victories – like for now, no more cancer!  For now, I’m heading back to normal energy levels.  For now, I am feeling like me again.  Yay!

Instead of feeling the agony, frustration and “jumping off the sofa to grab the remote” stress of the cliffhanger,  I need to just ignore the drama and live my life.  The June blood test is just that -a blood test scheduled in June.  I cannot focus on what may happen. I need to treat the next hurdle as I would the first season episode of a  television series.  I may watch it or not, just to spite it.

I was destined to be on stage – I felt it in my bones.  I loved it from my first production in third grade starring as Winnie the Pooh, to my last theatre performance in 2003 for 4 performances of Hen in Click Clack Moo. (I started my career as a silly bear and ended my career as a mother hen – ooh, heaven’s to Freud, what does that mean?)

In high school, as my hormones raged, the theatre really appealed to me.  It was the 1970’s and as a freshman, I remember watching my theatre idols, the Thornridge seniors do a production of Godspell.  I was thunderstruck; the music, the fun, the camaraderie, the community!  If I had any doubts about being in theatre, they were dashed after seeing that production.  I was hooked for sure. I had to be on stage. And I did move on to get my BA in theatre at Loyola and performed up until I was 40.  After 40, I didn’t lose my love for theatre, just a lack of interest in poverty – I could never quite make a living at it.  So, I moved on to the business world and started doing voiceovers – just enough to keep my creative side happy.

Ironically, I never performed in a production of Godspell, only served as producer and a brief stint as choreographer for an interesting production about 20 years ago.  I may not remember what I had for dinner last night, but like Jesus Christ Superstar, I know every lyric to Godspell.  As a side note, one of the reasons I fell in love with Jack was because he knew all the lyrics to Jesus Christ Superstar and each year around Easter we do a sing-a-long.  Jack wasn’t as enamored with Godspell as I was, no Ian Gillian or Murray Head, so I did my own Godspell sing-along…

When I received news that my radioactive scan results were inconclusive, I was worried, but when I learned the thyrogobulin blood test came back with a low number (which is very good,) I was so relieved.  This meant I didn’t have to have radioactive iodine treatment and it appeared that no cancer cells remained.  The significance of learning the news over the Easter and Passover holidays; a time for renewal and rebirth, wasn’t lost on me.  As I have said before, I am not a religious person, more spiritual in nature and I firmly believe everything happens for a reason.  So I have embraced my cancer experience as gift vs. a curse.  I have learned so much during my thyroid cancer journey and expect I will learn even more as I continue with the maintenance portion of the experience.

Music lyrics and quotes from plays and movies always hit me during times of stress or happiness.  I’m odd that way.  So when I hung up with my doctor on Thursday, the song, “All Good Gifts” from Godspell played in a loop in my brain the rest of the weekend.  The song, not just the lyrics, but the memory of seeing the show for the first time, the experience of drama, laughter, music, joy, theatre and community came flooding in.  And you know, that is just what my cancer experience has been to date.

DRAMA

Learning you have cancer or any serious illness is pretty dramatic:  The anguish, the fear of the unknown, will the treatment hurt, is it life threatening, how will my partner, family, friends deal with it.  How will it change my life?

The days leading up to my surgery were rough.  I did indeed go through the Elizabeth Kubler Ross model of the 5 stages of grief: Denial, Anger, Bargaining, Depression and Acceptance.  Interestingly, I studied Kubler Ross in the 70s the same time I fell in love with Godspell, All That Jazz and the TV movie “The Griffin and Phoenix” with Peter Falk and Jill Clayburgh.  It was my tutorial for things to come.

What I learned from the “dark days” is that you have to go through the stages of grief.  You just have to feel.  I read an interesting blog the other day and the author said her acronym for FEAR is “Feel everything and recover.”  And that is the “Truth Ruth.”  Do not deny your feelings during this dramatic time.  Repression and suppression will only hurt you.  Get it all out, so you can concentrate on your recovery.

And as a hormonal 14 year old watching Godspell, I felt EVERYTHING around me.  I swooned.

Lesson: Drama is awful, but short-lived, so swoon and feel during this time.  You will thank yourself later.

LAUGHTER

One night after reading what to expect during my rapid 4-6 week period of intense hypothyroidism, I sat bolt right in bed, terrified.  The symptoms sounded so surreal; feelings of fatigue so severe you can’t get out of bed, mental deficiencies due to brain cognition issues, weight gain, swollen and puffy face and eyes, “It is like you are floating above your body and mind.  You have no control over them and it is frightening.”  I put the book I was reading down and cried.  Jack told me to throw the book away.  “Not everyone feels the same thing, we are all different!” he said.

Losing control of my body and mind is extremely scary to me – because I am a control freak.  So I said to Jack that the only thing that will jolt me out of depression or the hypo-haze is laughter.  His job was to make me laugh or find people that would.

Although I hate to admit it, the book I was reading that awful night was right and the symptoms I felt during hypo-haze did match pretty darned closely to how it was described.  I felt out of control for 5 weeks.  But you know, that was ok.  Being out of control is actually rather funny.  Jack made it his goal to get me to laugh at the situation, at myself, at other things going on in my life.  It was liberating after a while. Even today, day 4 of taking Synthroid, although I perked up a little bit, I am still in the hypo- haze and Jack made me laugh so hard I cried.  It gave me a jump start to my day.

Lesson:  Getting through cancer or illness is personal, so find what will help you through the treatment.  Laughter is the best medicine, so if you can, look for the humor in every situation, and if you fail to find the humor, find that person who will!

COMMUNITY

You have heard the phrase many times before and yes, it can be perceived as cliché.  But in this case, I firmly believe it to be true, “It takes a village…”  And for me it really took a village to navigate my way through thyroid cancer.

Being an extrovert, I need people to motivate and inspire me.  All my life I have thrived working with groups of people who share a strong sense of community – cancer is no different.  As an extrovert I would have wilted if I had to deal with this alone.  (But, I also respect those who prefer to deal with illness alone.  I know many who do.)

As a former event planner and current team director, I am no stranger to project management.  So when I learned of my diagnosis, I put together my medical team and started a cancer binder keeping track of questions to ask, doctor appointment summaries, treatments, glossaries, diets, contact lists and a journal.  I knew who I wanted to serve as my sounding board, my cheer leaders, and my support system.  I planned my treatment and recovery schedule.  I shopped and stocked my kitchen shelves and book shelves.  I assigned tasks.  And then after I thought I prepped enough – I opened myself up to the natural flow of community.  My family and friends started sending me kind notes and cards, flowers and gifts.  There were visits, and texts, and emails and Facebook posts, and insta-parties and meditation sessions.  I felt so filled with love, positive energy, and joy; I knew I could do anything.  It was a no-brainer that I would beat cancer.  I knew it in my heart.

Lesson:  I recognize we all have a personal journey; however, interacting with others does have a significant effect on recovery.   Find the level of interaction and community that you feel comfortable with.  Open yourself up to love and positive acts from others during your treatment and recovery, and it will bring you profound joy.

SING ALONG!

Right now, I’m “jump on the couch during the Oprah show” happy.  But the part of my brain that keeps looping “All Good Gifts” is reflective, so I have to go with it.  I am grateful for the gifts in my life – the gift of difficult times and great joy, and I look forward to more and more and more and more.

Ok, all you Godspell fans, you know who you are…click on the link here and sing along with me:

All Good Gifts

We plow the fields and scatter the good seed on the land

But it is fed and watered by God’s almighty hand

He sends us snow in winter, the warmth to swell the grain

The breezes and the sunshine, and soft refreshing rain

All good gifts around us

Are sent from Heaven above

Then thank the Lord, thank the Lord for all his love

[CHORUS]

We thank thee then, O Father, for all things bright and good,

The seedtime and the harvest, our life our health our food,

No gifts have we to offer for all thy love imparts

But that which thou desirest, our humble thankful hearts!

[ALL]

All good gifts around us

Are sent from Heaven above

Then thank the Lord, thank the Lord for all his love

I really wanna thank you Lord!

All good gifts around us

Are sent from Heaven above

Then thank the Lord, oh thank the Lord for all his love

The 14 year old girl inside me in swooning right now.  😉

The other day, my friends and I were discussing the lost art of note writing.  Not the thank you note variety, but the invitation, the “Come on over tomorrow for tea,” “Do you want to go to the club for a game of tennis?” “Please meet me in the same secret spot…” sort of note; which then made me think about the Telegram.  Before the Internet age, the Telegram was used to deliver urgent messages; good news like babies born, engagements, job offers or bad news like illness or death.  In the new world of email, the internet and texting – note writing and the Telegram are pretty much obsolete.

I am a huge fan of Downton Abbey, the Golden Globe winning series chronicling the lives of Edwardian family, the Crawleys. Where the Telegram is almost a character in itself.  During my hypo-haze, my whole left brain function has been on hiatus, and the right brain, creative part of me is in overdrive.  I had this vision last night of how my journey with thyroid cancer might be played out on an episode of Downton Abbey. (Fade out slowly into a dream sequence…)

Cue Downton Abbey theme music.  Cut to scene in Downton’s servants’ quarters.  Mrs. Patmore is bustling around trying to figure out the ingredients to Peach Melba and Daisy is agonizing over how guilty she feels for getting up in the morning.  Mr. Bates and Anna are brooding at the table worrying if what they had for breakfast will land Mr. Bates in jail and O’Brien and Thomas are hatching a plan so evil, Downton will surely be destroyed, surely…  The mood is broken when Lord Grantham rings the bell for Carson and he bumbles up the stairs.

Cut to the dining room, where Lord Crawley, the Earl of Grantham and Lady Cora are sitting at the table. The Dowager makes her graaand entrance, and noticing no one there comments, “Where are we…America?” The girls slowly come down, and then Isobel and Matthew Crawley enter.  Breakfast is served.  Suddenly, Lady Mary is taken ill.  Matthew scoops her up in his arms and rushes her to her room.

Cut to Doctor Clarkson delivering the bad news, “I’m afraid Lady Mary has Thyroid Cancer.”  The Dowager grimaces, “Cancer?  No one kisses a girl with Cancer.”  Cora weeps silently; Lord Grantham asks if anything can be done.  “No, I’m afraid; we just need to keep her comfortable.”

Isobel Crawley, who while in Paris has taken a course in thyroid cancer focusing on the papillary kind, speaks up.  “Dr. Clarkson, I beg to differ, I feel if we operate to remove the thyroid and then induce a rapid hypothyroid state for 4-5 weeks, have her on a low iodine diet eliminating dairy and seafood, then hit her with radiation she will be fine.”  The Dowager turns abruptly, “Radiation? Is that a cream the bourgeois use?”  Dr. Clarkson dismisses Isobel, but Carson pleads, “Lord and Lady Crawley, on behalf of the servants we insist that you try this new treatment, Lady Mary means the world to us and without her we would have nothing to do.”  Lord Grantham acquiesces, “Well, we still have the hospital set up in the living room from the war.  Please go ahead Isobel.”

(I know this photo is of Cora – but I am using it for dramatic effect…)

Cut to dark staccato music and images of surgery and Lady Mary moaning and rolling in bed.  Cut to images of Mr. Bates and Anna brooding at table, Daisy anguishing and feeling guilty that she didn’t like Lady Mary more, Mrs. Patmore and Mrs. Hughes fighting over what to serve during the non-iodine diet, “No dairy, have you lost your mind?” Then cut to Dr. Clarkson sending off the blood tests to Paris for analysis.  Time ticks slowly, days and then weeks pass. Lady Mary wilts and wilts, “She’s getting worse,” gasps Cora.  Matthew Crawley paces and then throws himself at Lady Mary’s feet holding on for dear life. “I should marry you right now…” The servants brood and brood.  O’Brien and Thomas try to scheme something evil to rouse the group – laying bars of soap all over the dining room floor in hopes of something…something…

Then the Telegram arrives.  Carson takes it from the Telegraph Boy, methodically retrieves the silver letter tray, calmly and slowly places it on the tray, walks the length of the hall (which takes maybe 20 minutes) and delivers the Telegram to Lord Grantham.  End of Episode.  (Serioulsy, that would happen, but it’s my episode, so it doesn’t end here…”

Lord Grantham rips open the Telegram.  Cora holds her hands to her face, the servants stand together arm in arm.  He reads, “Bloodwork results good (Stop) No sign of cancer (Stop) No Radioactive Iodine Ablation (RAI) needed (Stop) Take Synthroid tomorrow (Stop) Move on with your life (Stop)” A hush falls over the group and the Dowager comments, “One can’t go to pieces at the news of every illness.  We’d all be in a constant state of collapse whenever we opened a Telegram.”

Cut to Lord Grantham opening a bottle champagne and toasting a now beautifully dressed Lady Mary with a well appointed scarf.  The servants are in the hall as well and everyone toasts, “To Lady Mary!  Cheers to being Cancer Free!”  The Dowager turns to Isobel grabs her hand and says, “Do you have a little of the Radioactive Iodine Ablation crème?  Paris fashion is all the rage now…”  Isobel rolls her eyes.

Cue doorbell.  The Telegraph Boy is back.  Carson snatches the Telegram from him, slams the door, tosses it on the tray and hands it to Lord Grantham.  Confused, he opens the letter, “I feel good about the decision NOT to have the RAI (Stop) However, we still need to discuss the results of your blood test further (Stop) I will be on vacation until April 14th (Stop) Please call my office on Monday April 16 (Stop) Dr. Swade”   Everyone looks at each other and the camera holds steady on Lady Mary’s worried gaze as she looks out the window.  End of Episode.

I didn’t receive a Telegram yesterday, but I did receive the equivalent: 2 phone calls.  One around 5:40 p.m. from my rock star ENT, Dr. Doshi stating that the blood test results were good, no cancer cells lurking about, so no radiation needed.  He felt all looked really good from his end.  Then after the huuuuge weight lifted and a joyous celebration ensued consisting of a glass of wine and two pieces of cheese (not allowed on the non-iodine diet,) I went to bed early (still pretty darned hypothyroid.)  I missed a call from my endocrinologist, Dr. Swade.  It was nice – he called around 9:45 p.m. and left a message that basically said the same – no RAI needed, but he wanted to discuss my bloodwork results.  And of course he is going on vacation  next week, so call the office on the 16th.  I have no idea what that means.  My take is that although the cancer part is over, the journey with regulating my thyroid hormones and suppressing the auto immune that caused my cancer is going to be an ongoing battle. (Anyone who has thyroid issues probably knows this more than I do.)  Nothing like a buzz kill for ya, but, hey, I can take it.  It’s just another part of the journey.

So, I am off to eat some more dairy products, and yes, maybe another glass of wine later this evening!

Thyroid Hormone:  “So, we are friends then?”

Lynne as the Dowager:  “We are allies my dear, which can be a good deal more effective.”

Note:  Radiation therapy wasn’t introduced to treat cancer or illness until 1936.

http://www.wired.com/science/discoveries/news/2007/12/dayintech_1224

I’m so tired, I haven’t slept a wink
I’m so tired, my mind is on the blink
I wonder should I get up and fix myself a drink
No,no,no.

The Beatles

Jack and I have this game we play when we are both super tired.  We try to top each other’s fatigue.  It goes a little like this:

Jack:  I’m so tired.

Lynne:  I’m so tired I’m falling asleep in front of you

Jack:  I’m so tired I’m sleeping as I talk to you

Lynne:  I’m so tired I’m sleeping right now.

Jack:  I’m so tired I fell asleep an hour ago

Lynne:  I’m so tired I fell asleep in 1963

Jack:  I’m so tired I fell asleep before you were a twinkle in your Mom’s eye

Lynne:  I’m so tired I fell asleep in a past life…

You get the drift…… What?  Um, sorry, I drifted off for a second.

Well, folks, I have officially crashed.  Today I am more tired than I have ever been during the 4 weeks of hypo-haze.  My spirit is still high, but my body is soooooo tired…..

What? Um, so sorry, where was I…

Today I have been waiting and waiting and well, waiting some more for the official test results to either tell me that I have to have radiation or my treatment is complete and I can move on and take my thyroid replacement drug – Synthroid.  Last week was a blurrrr of mixed messages, inconclusive test results, anxiety, agonizing over information to determine if I should have radiation.  Basically my type of cancer doesn’t fit a mold – so the scan results could conclude that a blast of radiation is an insurance policy or a blast of radiation is a waste of time.  Last week my doctors had differing opinions.  Last week I was pulling my hair out.

Today – a glimmer of hope.  My primary physician, my rock star ENT whose mother passed away last week and was unavailable to review my scan results, looked at them today.  He called to say that even though the results were inconclusive, he felt very confident that radiation is not needed at this time.  Buuuuut, he wanted me to have ONE. MORE. BLOODTEST.  I was one step ahead of him (can you tell I am tired of being tired…) “Oh, you did the blood test on Friday?” he asked, surprised. “Great!  I will check to see if the results are back.”

The results of the blood test will tell him whether any abnormal and/or cancerous thyroid tissue may have been left behind after surgery. This particular blood test is ordered on a regular basis after surgery to make sure that the tumor has not come back or spread.  I had to do a little research on thyroglobulin to understand why a little blood test is the deciding factor.  So here’s the scoop: “If thyroglobulin concentrations are initially elevated in a person with thyroid cancer, then it is likely that thyroglobulin can be used as a tumor marker. Thyroglobulin levels should be undetectable or very low after the surgical removal of the thyroid (thyroidectomy) and/or after subsequent radioactive iodine treatments. If levels are still detectable, there may be abnormal or cancerous thyroid tissue remaining in the person’s body, indicating the need for additional treatment.”

ZZZZZZZZZZZZZZZ…..  Um, sorry….where was I?  Ohhhh, yes.  I’m tired…

So, I wait and wait, and wait some more.

My wonderful friends came over yesterday afternoon and brought me an Insta-party.  I didn’t have to lift a finger.  They brought food, fun and festivities.  They cooked and cleaned up. I laughed until I cried, my spirit soared.  My body pooped out.  How low, can you go, how loooowww, can you go?

Today I went to work and on the way home on the train, I didn’t have the strength to open my energy bar, so I pulled out a pen from my purse so I could jab it open, which in turn made me dump my iPhone on the floor, as I picked up my iPhone, the lunch I didn’t eat fell out of my bag, I reached for my bag while grabbing the iPhone and accidentally opened up iTunes and music started blaring.  Trying to stop the music, I dropped my purse and the remaining books out of my bag. Trying to juggle everything, I accidentally deleted some texts and then the conductor came by to punch my ticket.  I dropped everything and with heavy head and teary eyes, I said, “Wait just a second.”  The Metra ticket was on top of the mess.  Thank you gods of chaos.  He punched my ticket and the nice gentleman sitting next to me helped me gather my things.  I was able to shut off iTunes and stop myself from deleting everything I had on my phone.

Yup.  Today I’m tired…… Oh, sorry….what am I typing?

I think my dogs and plants and  Jack have what I call, “Empathyroid.”  They are all tired too: tired of waiting, tired of illness, tired of me being tired.  One more day and then news – either good or news of radiation treatment.  Either way – any news is good news because I will have a course of action.  A plan.  An endgame.

But in the meanwhile…..

ZZZZZZZZZZZZZZZZZZZZZZZZZZZZZZZZZZZZZZZZZZZZZZ…….

You know that Gary Larson greeting card with the image of a man yelling at his dog?  At the top of the card you see a man with the caption:

What we say to dogs” – “Ok, Ginger, you stay out of the garbage, you stay out of the garbage or else!’”

And at the bottom is Ginger and the caption reads,

“What dogs hear” – “Blah, blah, blah, blah, Ginger, blah, blah, blah…”

Well, Jack, my partner extraordinaire of lo these 16 years, has a theory about what I hear.  He says he thinks I have a running dialogue in my head and it goes something like this:

“Lynne, Lynne, Lynne, Lynne, Lynne, Lynne. Lynne, Lynne, Lynne. Shoes.”

“Lynne, Lynne, Lynne, Lynne, Lynne, Lynne, Lynne, Lynne, Lynne.  Martinis.”

“Lynne, Lynne, Lynne, Lynne, Lynne, Lynne, Lynne, Lynne, Lynne. Whippets.”  And now,

“Lynne, Lynne, Lynne, Lynne, Lynne, Lynne, Lynne, Lynne, Lynne. Cancer.”

Hmmm, does this mean I am self-involved?  Nah, I just love to talk about myself and Jack is an awesome listener. “I love talking and not listening.”  A match made in heaven!

Illness of any kind automatically makes the sick person very self-involved.  It just does. No matter if is a cold or cancer it can be all encompassing and takes every bit of the person’s energy and resource directed inward to help them get better.  This of course is rather difficult on the person’s significant other, family member, BFF, co-worker, friend or caregiver.  Who takes care of the caregiver?

Today, I dedicate this blog post to the superhero, selfless wonder and sentimental man, I lovingly refer to as my “Nurse Jackie.”  Now, if you have ever seen the Showtime series, Nurse Jackie starring Edie Falco and also starring one of my fabulous friends, Stephen Wallem playing Nurse Thor, you may wonder if there is any comparison.  Hmm, minus the affairs, pill popping and children, the similarities are pretty spot on.

The Nurse Jackie on Showtime is fearless, a risk taker and a champion of the downtrodden and suffering.  But she is also tough as nails and will kick you’re a** if you deserve it, read you the riot act if you need it, and give you some tough love before you even think about doing something stupid.

My “Nurse Jackie” is that and much more – which is why I am so lucky to have him with me on this journey in life and illness.  In sickness and in health…although to the dismay of my mother (that’s another blog in its entirety) and my family and friends, we are not married. But we have been co-existing in blissful partnership for going on 16 years, own a “happy house” in the western suburbs of Chicago, and have two hilarious whippets.  Love, Whippets and Shrubbery.  “The life of Riley”, as my Nana would have said.

When I was diagnosed, I had this irrational fear that Jack would think it too big for us to handle and as I was processing the information I was finding ways to give him an “out”.  We weren’t married; therefore, he didn’t have to deal with any of this.  There is nothing legally binding us, so he could just pop off to Amsterdam during my treatment and pop back in when I was done.  Or he could go to the west coast to stay with his friends.

Heartbreaking as it is, illness sometimes IS too big for relationships to handle and they fall apart.  Not this iron clad partnership.  If my self-centered, drama queen, high maintenance personality hasn’t scared him off by now, nothing, not even, the biggest drama queen of them all, CANCER, can scare Jack.  Jack is pretty tough and isn’t afraid of anything, except an odd fear of deer (?)  On our first date, he said, “I haven’t killed anyone since 1984.”  A little off-putting.  But as I choked on my sip of wine, I realized he was referencing the movie “True Romance” which was one of my guilty pleasures at the time.  Add to the mix that Jack makes a mean dirty vodka martini, performs theatre of any kind; sock puppet, lizard, you name it, and has an extensive music collection which we dance to regularly… well as Rosemary Clooney sings, I met my” immovable object” and unlike the song – nothing’s gotta give!

My Nurse Jackie taught me all the wonderful things about being a caregiver.  He does it up right.

Here are some signs of a great caregiver and partner:

In pre-op, he takes the doctor aside moments before surgery and says, “You realize my girlfriend is a voiceover artist, so I would appreciate it if you didn’t cut the pharyngeal nerve which would damage her vocal chords and destroy her career.”

He camps out in your hospital room, ensuring that each time you have to go to the restroom which is pretty much hourly due to the IV, he takes off the leg massager things, ensures your chest tube is stable, disengages you from all wires, unplugs you from the wall and helps you wheel your little IV station into the bathroom.  He even insists on going in with you, and when you insist that he not, he stands directly outside the door to hear a potential thud or splash if you fall in.

As a habitual smoker he foregoes cigarettes over night for fear of leaving you in case you need him.  He even watches super awful TV and sleeps on a lovely looking, but rather stiff sofabed keeping one eye on you all night.

He distracts you as the doctor pulls out the incredibly painful neck drain referencing True Blood and Sookie Stackhouse.

He prepares a comfortable resting place on the sofa and runs out to get you straws, soup and pudding when you realize you cannot swallow just yet.

When he hears you shriek, “Scarves, I need scarves!!!” after taking off your bandages, revealing a Frankenstein gashy type scar – he runs to Walgreens down the street to get you two bandanas and a green winter scarf with matching hat and gloves- on sale of course.  You look like an old cow hand or a kid bundled up to build a snowman for a couple of days, but it does the trick.

He fields phone calls from friends and family when you cannot talk due to vocal cord swelling.  He still fields phone calls and emails when you have your voice back, but just don’t feel up to talking.

He goes with you to each doctor’s appointment, making small talk with the people in the waiting room and making sure you ask the tough questions.

He creates a box for your hospital bills getting ready for the battle of medical billing.

He tells you he thinks you are beautiful when you have a swollen neck, hair on top of your head, no makeup and are gaining weight from the effects of hypothyroid.

He builds you a bathroom in the basement and makes plans to “Dexter” it out with plastic sheeting should you need Radiation Iodine Treatment and are radioactive for a while.  He is excited to acquire a Geiger counter and capture how “hot” you really are.

He texts you every couple of hours while he is at work to ensure nothing has happened to you.

He withstands the Cybil-like personalities of hypo-haze:“I’m fine, I’m tired, I’m crabby, I want cheese, I want a martini, I have a positive outlook, I’m afraid, I had a spiritual awakening, I am depressed, I want my life back.”

During my illness I received some lovely cards, gifts, gorgeous flowers, wonderful emails and support.  My Nurse Jackie also received the support of friends, but it’s not the same.  We forget about our caregivers and sometimes take them for granted.

I have written thank you notes to the people who have given me such lovely gifts to lift my spirits. There isn’t a thank you note long enough or worded beautifully enough to thank Jack for all he has done for me.  I don’t know what I can ever do to repay him for his devotion and love during this time of illness.  Hmmm, I bet bacon would do the trick, or, I’m thinking he wouldn’t mind that trip to Amsterdam after all.  Well he is Dutch don’t ya know…

Thank you Nurse Jackie.  I know there are still miles before this cancer journey is over, but I wanted to say, I love you.