It’s been a while since I wrote an email letter.  NOW, with my NEW WEBSITE, you may hear from me again!  The previous blog posts were some of the past “Best of” writings I sent out to family and friends.  I still try to keep Facebook updated on ‘chemo days’ with a chemo headshot picture.

Since I began this journey 3 years ago, the quiet writing I thought I’d be doing daily in journals evolved from the journal pages, to email letters, to the full-blown show of “Because I Can, Sir”!  I have been blessed to perform this show – or some variation of it – thirteen times, and several more are being planned for this spring/summer, and one group has scheduled me WAY in advance for January 2019!

Most of you know that my journey with Cholangiocarcinoma began with a Richmond oncologist and a Richmond surgeon thinking we should schedule surgery to remove my large liver tumors followed by chemo, as a cure for this terrible cancer. My tumors were the size of a ping-pong ball and an iPad mini.  We went to NY to consult with a surgeon at Memorial Sloan Kettering Cancer Center, to have him do the surgery.  He and the tumor board decided that surgery would make this monster spread more and very quickly if it was touched by the surgery.  They were able to insert a chemo pump, the Kemeny Pump, as they call it – named for my MSKCC oncologist, Dr. Nancy Kemeny.  Dr. Kemeny pioneered the use of the Hepatic Artery Infusion pump, the Codman 3000, to treat colon cancer that had metastasized to the liver.  That is her cancer specialty.  They were now using this pump in a new trial to treat cases of Intrahepatic Cholangiocarcinoma.  My granddaughter calls this my “pump lump”. 🙂

I was told 3 years ago that I had somewhere between late stage three and four very ugly cancer that had a 5 year survival rate of 2%, and that was for early stage CC.  My original “shelf life” upon diagnosis was 2 – 6 months life expectancy. Chemo was prescribed as a tool to shrink the tumors and make me more comfortable.  They call this Palliative care. I didn’t expect to be here today.  I’m thrilled that I am. I’m humbled knowing that I’m only here today because God is allowing me to be here.

Bill and I are about to leave this afternoon to hit the road again, to drive to NYC. We do this once a month, sometimes more often.  Tomorrow I will have an MRI and a CT – internal ‘school pictures’, to peek in and see if Fred and Ned and Bob (my newest little tumor) are growing or sleeping or dying.  I’m not anxious, like most people are before scans. I know that the fact that I am here right now, in this moment, is a part of God’s plan.  I also know that I am supposed to live in this moment and reach out to as many people as God puts in my path, to encourage them to live like I am living.

I hadn’t thought about my 3 year anniversary with my HAI chemo pump, but my daughter Ashley wrote a wonderful note on Facebook telling everyone of my ‘anniversary’ with the pump.  For the first time, I looked at the abbreviation for Hepatic Artery Infusion (HAI) pump, and saw the words to a song we used to sing in church many years ago. Here Am I.  I didn’t remember all of it, but the part of the music that triggered this thought goes, “Here am I, send me.  Here am I, Lord send me….” I knew I had to find the chorus and share it.

“Here am I, send me. Here am I, Lord, send me. Unto Thee, willingly, yielded I come.  Show the path that I must walk, compel me then to go. And if I stray, bring back the light of day. For here am I, send me, I pray”.

Isaiah 6:8 says “Then I heard the voice of the Lord saying, “Whom shall I send? And who will go for us”? And I said, “Here am I. Send me”.

Where are you going today? Are you being sent there for a reason? If you don’t know, then you are not listening.  If you see no one who needs you, you are not looking.  None of us are promised to live the next three years, three weeks or even three days. If today, you  hear the voice of the Lord asking, “who will go for us”, are you ready to answer “Here am I”? I hope so. I highly recommend going where God leads. The path God put me on is incredibly bright, happy and full of people He’s placed in my daily path. People who need to see His strength through My weakness. I am daily amazed, and grateful to be here today, 3 years now with my HAI pump.  The BIG titanium one.  Size of a hockey puck.  🙂

 

 

January 19, 2016

Well, we all made it through a busy year’s end – Christmas, my birthday J, parties, celebrations, concerts, New Year’s celebrations, reflections and resolutions.  Right?

There seems to be a heavy amount of busy-ness we impose on ourselves in November and December each year.  In a way, it’s good.  Well, it was good for me, because cancer wasn’t the focus.  It felt great to be surrounded with family and friends – parties and visits sprinkled all through those last two months. Our calendar and schedule seemed almost relentless, even for a “healthy” person.  It was certainly a season of hurry up.  When cancer is living with you, you want everything done right, done well, and done sooner – rather than later.  “Later” is risky to put on a time-line.  I’ve learned to live each day, for each day.  In the now.  Which can seem like a constant “hurry up”.

Plan the parties.  Buy the gifts.  Decorate.  (where did this glitter come from?) Wrap the gifts. Cook the meals.  (there’s glitter on my hands that won’t wash off!) Bake and decorate cookies with Haley.  Attend (and perform in some) performances.  (why are there piles of glitter in odd places?) Go to extra church services.  Mail some gifts.  (vacuum glitter piles) Send Christmas cards I bought 3 years ago.  (there’s even glitter on the cards).  Hurry up – and wait.

Clean up after the parties.  (Some people are wearing glitter.  Did they come in with it, or is it leaving my house on its own?) Put away the gifts.  Pack away the tree and décor.  Plan to lose some weight from all the big meals and parties. (damn, cookies!) Find a random drawer to throw Christmas cards in. (maybe that’s why there’s glitter in my underwear drawer?) Hurry up – and wait.

Last week’s visit to New York was par for the course – hurry up – and wait.  We started the day early with and MRI.  Hurry up and get there early – over an hour in the machine – then wait. Results have to get to the doctor.  Hurry up – get to the Doctor’s office in another building.  Blood labs.  And wait. Still waiting on MRI report. Wait longer. Finally see Dr. Kemeny.  MRI shows a little more shrinkage!  Blood labs show liver is finally back in ”good shape”.  We could start adding back chemo in the pump, but with the single remaining chemo (Gemzar) working, she suggested we keep on this track – and wait to see if we need to add more chemo back later.  Hurry to chemo infusion lab.  Wait.  Wait longer. Pharmacy is backed up.  Wait. Finally “juiced up” and ready to return home after 8 hours of hurry up and wait at Sloan Kettering last Monday.  Luckily, the 6 hours home was not the usual hurry up- and wait traffic.

My life – now, with cancer – is defined and regulated in this new “rhythm” of hurry up- and wait. It’s difficult to wait for lab results, scan results and doctor appointments.  It’s difficult to plan one month ahead, let alone think ahead to this coming Thanksgiving and Christmas.  Recently, some of you have added cancer or other terminal disease to your lives, or to those of your spouse or family member. From my experience, so far, the hardest part of living with cancer is the same thing we all usually face each January – taking off the extra “wait”.

I love you all!

P.S. Turn over in your Hymnals….actually David’s Hymnal (book of Psalm) to # 27 to the coda and big ending.  “I am still confident of this: I will see the goodness of the Lord in the land of the living.  Wait for the Lord; be strong and take heart and wait for the Lord.

May 22

“You CAN’T take it with you”?!  Metastatic Musings for Memorial Day 2015

Memorial Day, originally “Decoration Day” began in 1868, three years following the Civil War. Or, as some of us Richmond southerners call it [read this out loud] “thuh woh-ahr ahv Nah-thun aggre-shun.”  😉  Memorial Day became a federal holiday in 1971 to honor all who died while serving in the US military.

Several of the men in my family whom I have had the honor of knowing, served our country in the military; but, thankfully for me, none of them died during their service.  Pappaw was a medic in the Navy during WWII, my two Great Uncles, Charles and Carroll served during WWII in the Air Force and Army, and my Dad was in the US Army Reserve later on.  I am, as I am sure you all are, grateful for all the brave men and women who have died OR survived serving our country.

Yesterday, I read the 1868 Decoration Day speech given by Ohio congressman James Garfield (who would become President in 1881).   One sentence really spoke to me as I am gearing up for this new-to-me battle with cancer.  In speaking of those recently buried at Arlington, Garfield said, “Each for himself gathered up the cherished purposes of life – its aims and ambitions, its dearest affections – and flung all, with life itself, into the scale of battle”.

It’s difficult having a label, or a diagnosis of a terminal disease – knowing what you will die with.  For me, it’s cancer.  Whether active or in remission, it will always be a part of my body. I get to “take this with me”.  For others, it might also be cancer, or heart disease, diabetes, Alzheimers or AIDS.  For most of you, what you will “take with you” has yet to be revealed.

Back to reflecting on Memorial Day, it seems a bit selfish to think of my own eventual demise; however, I have been summoned into battle, and I know the stakes are high.

I am not carrying the honor and valor of military service and sacrifice to my future grave.  I WILL carry honor, virtue, bravery, love of country, family and friends with unwavering faith that my God will carry my soul on to its next journey – sometime, hopefully LONG AFTER this current battle is WON!

Hope you all have a meaningful weekend remembering ALL those who have gone before, who have sacrificed “their cherished purposes of life, and flung all, with life itself, into the scale of battle” for your liberty.

Still fighting here on the home-front,

Susan

 

Pic of my Pappaw – William Edward Case.  WW2 Navy medic.  Pacific.

Quality vs. Quantity – a Balancing Act                                                           March 8, 2016

First, let me begin with great news – today is my 1^st “LifeDay”.  One year post diagnosis, and months past my ‘expiration date’! We received great news this weekend from the latest CT scan and blood labs.  Even with chemo reduced to a minimum dose, the tumors and stricture to the bile duct continue to SHRINK.  Also, the liver is healthy and healed from prior chemo effects.  Thank you ALL for your continued thoughts, prayers and support.  Today is a very bright, balanced day. That’s why it’s a good time to share these thoughts.

I’ve been in many situations lately where I’ve come face-to-face with defining quality versus quantity. Last weekend at the state adjudications and spring conference for Virginia NATS (National Association of Teachers of Singing), where I am currently serving as VP in charge of adjudications, more voice students in Virginia were qualified to move on to Regionals (in South Carolina) than were expected by our regional hosts.  Yea, Virginia! But was this a showing of quantity over quality? No.  Our judges knew the level of singer we should send ahead; so despite new, unfamiliar and somewhat misunderstood scoring rules and rubrics, Virginia is sending a great quantity of superior quality singers ahead to the next level. As in this case, quantity can be obvious, but never assume quality must be diminished by quantity.

Another example of quality vs. quantity was evidenced this past week when my adult son accompanied me to Sam’s Club.  Warehouse clubs are the very definition of quantity. For only $8, Reed bought a 25 pound bag of long-grain rice.  Not just any rice, this was Riceland Rice from Stuttgart, Arkansas! Now, I can tell you, having been hatched and raised in Arkansas, I can attest to the quality of that rice. And because of the quality of those rice fields, thousands of skillfully shot ducks yearly grace the tables of homes and fine dining establishments in the region with favorites like duck gumbo, duck kabobs and duck in orange sauce (known in other places as duck a l’orange).  Quantity and Quality – in balance.

The one issue that is always front-and-center with cancer patients and their care-givers is weighing or balancing quality vs. quantity of life.  After diagnosis, there is no mandatory treatment.  In the case of my rare cancer, most treatment options are experimental, hard to obtain, and very risky.  But, no matter the cancer-flavor you’re handed, when you have multiple treatment options and hopefully, multiple opinions from several cancer specialists, you begin to make decisions about your own treatment plan by weighing the quality of life with quantity of life time.

Think about it like this.  You’re handed two heavy trays.  Hold these.  Balance these.  You want both.  How long can you hold them?  How long before one is too heavy to hold and you have to set one down? Can the life-items that are precious to you be consolidated from these split trays to just one?  What could you move? What could you give up? Which tray will you hold on to when you lose your balance?  Quality? Quantity? Which one are you trying the hardest to hold onto right now?

Hopefully, it won’t be a terminal diagnosis or crisis to make you realize the importance of life-balance. We make our plans, set long-term goals and tend to ignore the close-up, sometimes very important small moments and opportunities; those interactions we identify as distractions that slow our progression toward our self-defined “purpose” in life.  Or, we become so myopically concerned and surrounded by every day, attention-demanding happenings we lose our direction and purpose.  We don’t work toward our dream or achieve our goals.

Two trays in two hands.  Quality and quantity. Short-term, long-term.  Present and future. Some call this a “delicate balance”.  It’s not.  There’s nothing delicate about it.  It’s awkward and difficult to hold this balance. Someday, we will each be faced with a decision.  When and where to set the first tray down.  Then finally, the second.  My faith is level and stronger than ever.  That’s what I will rest my trays upon, and you will see and know I valued and balanced both quantity and quality – the measures of life.

How’s your balance?

Love you all,

Susan Braden

(read the whole chapter, but) Proverbs 16:11 says “Honest scales and balances belong to the Lord. All the weights in the bag are of his making.”

P.S.  If you need some good, long-grain rice, contact Reed Braden.  I’m a little concerned about his “balanced” diet as he consumes all that rice!

7/10/17  “Because I Can, Sir”! Journal writing for July

Waiting for Fall – a Portrait

A priest walks into…(not a joke) .. the 4^th floor chemo waiting room.  He enters talking loudly about health care policies on his cell phone (must be “long distance”?), and sits, still talking, to wait for his name to be called.  A grouping of chairs behind the priest hold an even older man, wearing a yarmulke, his head bowed, but in sleep.  A wide-open-mouthed sleep.  His wife is curled in a ball next to him reading a novel, hunched over the book.  Behind her, facing another direction is a woman in a bright pink “I have breast cancer” chemo cap. There were many more groupings of “WAITERS” – patients and families – in this waiting room. Doing as the room description suggests – waiting.

Next to me, to my left, is a Vietnamese family. The patient, the man, is reclining half on a chair, legs on a table, wrapped in a white hospital blanket. His wife and daughter were vacillating between speaking English and a faster patter of their native tongue. To my right, angled where we could see each other, my husband is softly “speak-texting” and answering work emails.  I’m sitting 12 feet away from the blanketed, moaning man having another of my ‘personal summers’ or hot flashes.  I start fanning myself and my husband, Bill looks up and tells me “it’s cold in here”.  So, I’m the odd man out, now?

One woman with two men, my age or older, enter the room and sit opposite me.  The look at me and acknowledge me with a quick nod, but no words.  One of the men has his hospital bracelet on.  All three sit, then begin talking rapidly, stepping over each other’s words.  Speaking Spanish, I think.  By this time, having “fasted”, I’m hungry for tacos.  Stereotyping, I know, but the language had a ‘spicy’ flavor. And tacos really aren’t Mexican food, so there’s that.

A woman, of at least my age, sits catty-corner from me.  She’s on her iPhone checking Facebook. Wearing rolled-up cut-off jean shorts, with a grey hoodie fleece jacket over double-layered tank tops.  Her hair was colored – medium golden brown, Clairol 5-C, if I’m not mistaken.  The same color I used for years as a root touch up between salon visits. Her hair is almost the same darkness as her darkly-oranged, dry, wrinkled tan. Her left hand sports a minimum 3-carat diamond, and her left leg, crossed over her right, “pumps” non-stop while she now stares into space, taking a visual break from Facebook.

“Father Corona, sorry to keep you waiting,” an arriving assistant said loudly.  The collared Priest stands up to go through the doors for treatment, and I’m so hungry, I visualize him as a lime-topped bottle of Corona.  I hate beer, so this is a new mental low for me.

The elevator opens and in walks “Panama Jack” and wife to take his place in the room for waiting.  His wife, evidently the patient, was skin over bones.  Dressed in all black over her porcelain, clear white, crepe-y skin, they were a study in physical contrast.  Soon, she perks up a bit with a cup of coffee from the hospitality bar.

Across the room there are at least eight other groupings of patients – with and without caregiver partners. They – we- all sit.  Wait.  Look.  Read donated magazines and papers we wouldn’t read at home.  Blanketing the entire 4^th floor waiting room is a multilingual symphony of sound.  Some who are seated are quiet, and some are somehow asleep.  How close are they – we – to a long, final sleep? There’s no way to know. And that is what worries us most.

Sometimes, when Bill and I drive to New York for our visits and treatments, we drive past the new World Trade Center.  I’m often reminded of the many lives lost in that terrorist attack almost 16 years ago.  Such an unexpected, quick death of nearly 3,000 people.  I remember watching on “live” television, the horror of seeing those who chose to fall from the building instead of staying to be consumed by the fires.

Today, as I look, as I wait in this “Waiting Room”, I wonder how many of us are slowly falling toward death – falling with one last gasp of freedom in the descending flight. How many of us will choose to stay – to be consumed by chemical or radioactive ‘fires’.

A second pink head-wrapped woman and her husband enter the waiting room and sit near me. I wonder if this will be the first or last time I will see her here. Her “flavor” of cancer usually has a better prognosis than mine.  I choose to not introduce myself and start a conversation because I’m finding myself falling into the trap of anonymity of this room of Waiting. Today, I’m not only waiting but watching, wondering and writing. Observing from the “outside” while seated in the “inside” waiting for a treatment that may or may not be real. A lab rat in a holding cage of other lab rats.  A worker for the future of cancer treatment or cure. I sat here in this room of waiting two weeks ago and started a new clinical trial.  Today is my second lab observation of my taking a pill that may be real, or it may be a placebo. A cold chill comes over me, not a hot-flash this time, and I find myself longing to live through many more cool falls and cold, chilly winters.

I glance around the entire room. We are the cancer-workers. Waiting in our work building, not far from where two much larger buildings sat 16 years ago.  Those buildings had, waiting inside them, thousands of unsuspecting workers starting their usual work on their last day on earth.  Some who were in the buildings lived to remember. Some died and are remembered.  And today, in the same town, I sit.  Waiting.  Watching. Wondering who here is falling slowly? Who is burning quickly?  Who is in the right fire-escape? Who will make it out of here alive?  If you are falling very slowly, do you know you are falling?

They call my name and it’s my turn to leave the waiting room.  Thinking about all of this, I may take the stairs when I’m done.

July 10, 4th week of the ClarIDH1 trial – with the Agios-120 pills – 2 each day.  Are they real or placebo?  Are they working or not? We WAIT and see…….

Journal Jan. 2, 2017!

“Let me be Perfectly Frank….”

New Years’ “Adam” – or the day that comes before “Eve” -, Bill and I went to scrounge the local hardware box stores to find pansies to give our courtyard some winter color (to replace the brown of the dead ferns). We also found ourselves roaming through the store for little things to complete some outdoor mini-projects. That evening, while inside Lowe’s, we met a stranger named Frank.

Backing up a little – for those of you who don’t know, or maybe don’t realize, we live downtown.  Urban.  Also in the midst of a large Urban university campus (VCU). We often have people approach us and ask for money -on the streets, outside stores, etc.  Those who really are aggressive and approach with a chip on their shoulder, or a strong odor of ‘disinfectant already consumed’, I have been known to stick out my hand and respond, “No, but if you’d like to give to my cancer fund….“ and usually they walk quickly away or stumble, say “I’m sorry” and leave.  I thought this might be one of those times.  Shame on me.

This stranger, without a buggy or merchandise in hand, who looked and followed us a little in the store, finally stopped us in the main aisle and asked me if I was a cancer survivor.  I smiled and said I was a current cancer warrior.  Fighting it daily.  He asked if he could hug me. He said softly that he’d lost his brother to cancer this year.  Then he said he’d pray for me – daily.  Bill, who saw all of this, walked up and said he had a bald head, too, and asked him for a hug!  We introduced ourselves.  Susan, Bill and Frank.  He promised he and others would pray for us daily.  I told him how sorry I was for his loss, but that I promised to pray for him daily, as well.  I haven’t been able to forget Frank.  I was called to prayer.

I’ve had many encounters with strangers where I’ve been blessed to share my story and how prayers, faith and a positive outlook has helped me so far.  Usually, these “random” meetings are usually forgotten, I’m sure on both ends.  I’m having trouble forgetting this one.  I feel guilty stereotyping Frank. Every time I think of him, I find that I’m saying a short prayer for him.  I’m hoping and trusting that he’s doing the same.  This encounter was also a reminder of how much I love my husband and his sense of humor, but more his gift of compassion he shows to strangers, usually more than I find myself wanting to do.

I’ve found in this encounter at the end of this crazy year and at the beginning of a year full of daily chances I hope to make the best of, that my New Year’s resolution is to be “Perfectly Frank”.  Not just “frank” in the no-nonsense faith and encouragement I hope to offer others this year, but “Frank”, like the Man. “Frank” as in someone who engaged THIS stranger of a different background, history, social status, color, etc., who was there as a messenger of hope.  A prayer warrior uplifting a cancer warrior in the battle.  I want to be “Frank.  Perfectly Frank.”  I hope you do, too.

Love to you all from the ‘battlefield’.  The last appointment following my most recent CT scan in NY, Dr. Kemeny said the scan was “Good”.  Not sure of the specifics, yet, but going with the attitude of today is good… I hope… frankly, I pray, that all of us will choose to live DAILY without fear, in the brightness of the gift of each God-given fresh new day.  Let’s put aside the bitter arguments, the things we cannot change, and let us LIVE in a way that is “perfectly frank”.

Love you all, Susan

April 5, 2015

I remember Easter Sunday mornings growing up.  Waking early.  Easter basket of goodies, plastic eggs to find with candy inside.  A new dress, usually big and frilly to wear to church, and the sign of big change, the happiest event of the year to date – the wearing of the WHITE SHOES!   This is the moment of monumental change. Darkness into light.  Winter into warmth. No matter the outside temps, southern fashion rules dictated the season change.  You can’t go back to black: well, unless it was black shiny patent-leather shoes.  Strappy-styled sling-backs preferred.  Dark-colored clothes, long-sleeves and bulky sweaters are banished to the back of the closet.  Light, happy colors move to the front!

 

I remember some years in which the new white dress-up Mary Janes were stiff, uncomfortable, and caused painful, little blisters.  Pastel Easter dresses, even when layered with the obligatory white dressy cardigan with pearl buttons, often wasn’t warm enough when Easter was “early.”  Change can be uncomfortable.

 

The yearly observance of Easter, the way it’s celebrated in Christian churches, forces us in one week’s time to experience (in a seemingly manic fashion) gruesome darkness that explodes into a giddy light.  Epic change.  Ready?  Or not.

 

A palm-frond parade of happy children one Sunday, sad songs that are slow and in minor keys that week – for church services most people don’t attend – switch to trumpets and loud pipe organ music playing the following Sunday morning.  Easter.  Resurrection Sunday.

As the choir and congregation begin to sing MY favorite Easter hymn, the “Gravy Song” (Up From the Grave He Arose), I know I will feel the stiffness and the pinch of my Easter shoes as I stand and loudly join the happy chorus.

 

Balancing joy with pain.  Hope with sorrow.  Faith with fear.  Tradition with change.

It’s difficult to balance when your new Easter shoes hurt.

 

Susan

 

PS.

I bought Haley’s new white Mary Janes, the sleeveless, frilly dress and the obligatory white dressy cardigan with pearl buttons to wear to “Big Church” this morning.  If the shoes start to hurt HER feet, they’re coming off!

 

Happy Easter, Y’all.

September 10, 2016

The wolf will live with the lamb…, the calf and the lion and the [Chihuahua] together; and a little child will lead them. Isaiah 11:6

I LOVE coming home.  Especially when my 5-year-old granddaughter, Miss Haley Renee Bell is the leader of the welcome committee!

Thursday night, Bill and Haley picked me up at the Amtrak station on my return home from New York on the train. I saw Haley standing in a chair, outside.  As I walk up, in the middle of my fellow travelers, Haley, still up on her perch, throws her arms open wide, and as I come in expecting a hug, she LOUDLY and happily greets me with this –

“Gi Gi ! GUESS WHAT?! YOUR DOG DIED”!

Now, I already knew Elsi took her ‘perma-sleep’ the day before, but Haley was quick to tell me how it would be OK – while Bill answered the obvious question of the man ahead of me, and others who heard and stopped. “Did your wife know?!” When Bill told him yes, he said that Haley’s delivery was the funniest thing he’s heard in a long time!

Here’s the Haley conversation.  “GiGi! Guess what?!  Your dog died!” I hugged her, but she wouldn’t get down off her perch. She continued, “It’s OK.  She’s in heaven with God and Jesus, and you can see her SOON”!   SCREECH…… my train of thought de-railed at that.  I said, “Haley, I hope it’s not really soon!” She replied, “Oh, not soon, GiGi, but you’re gonna see her again someday – AND she’s NOT peeing on your floor anymore!  Do you think she pees in heaven?  It’s OK, Jesus will clean it up”!

I hugged her down from her perch and we loaded the car.  On the way home, after discussing her new Kindergarten class she started this week, who was playing well together on the playground, and what left-over lunch snacks she wants to eat from her lunch box, she is obviously still thinking of Elsi and heaven, when she draws this parallel: “GiGi, Elsi is in heaven with Daniel and the Lion’s Den, and the lion might eat Elsi for a snack”!  I said, “I don’t think that would happen in heaven, Sweetie”.  And with a final “OK” from Miss “Haley-Bug”, the subject was put to rest….. peace on earth, for now, anyway.

The wolf will live with the lamb…, the calf and the lion and the [Chihuahua] together; and a little child will lead them. Isaiah 11:6

Quick update on my battle – after the recurrence noted in July and changing the chemo and reusing the pump for chemo, we are happy to report some shrinkage of the new outer layer of growth, and NO new spots or metastasis!  Tumor markers are on the road back down, as well.  AND the “Because I Can, Sir” show did so well here in Richmond, we are doing it in NY for an “industry invited workshop” Oct. 2 to prepare for a big splash with it as a fundraiser for Metro Ministries and Dr. Kemeny’s Pump research fund at Sloan Kettering”, hopefully in Early March. I’ll keep you all ‘in the loop’ on upcoming dates.  We also are talking some about other locations. Let me know if you have a group that needs to hear the show.  Also, CDs have been sold out, reordered and a fresh supply will arrive next week of my “Down to the River” CD. If you’d like to order one – or more- email me.

Thank you ALL for your love and prayers.  I know I’d be “with Elsi, God and Jesus, and Daniel and the Lion’s Den” right now, if it weren’t for your love and support.

Love you all, Susan.

May 13   “Frozen Fractals All Around”

May 7 – 13 – Systemic Chemo Round 1

I now know more of the secret “backstory” of Disney’s “Frozen” movie.  Elsa’s special gift, of being an Ice Queen, was actually a side effect of her chemotherapy with oxalipilatin.  Had to be.

“Cold sensitivity” doesn’t begin to explain it.  Within the first hour after my first systemic chemo treatment this week, I took a sip of iced tea – thnking nothing happens this quickly, and if so, a straw would make it ok – and thought I’d swallowed shards of glass.  Crazy!!  Touching cold, from refrigerated food to handwashing feels like frostbite – that combination of cold and hot that leaves fingertips numb and tingly.  That was Thursday. Day 1.  Today, Monday, it’s hardly noticeable.  Mom is here this week from Louisiana to help me.  We were all thinking I’d be pretty sick at this point, but NOTHING so far.  Unlike Elsa, I didn’t run and hide from my new found “icy power.”  While I’m a little confused, i’m more amused at the wondreous workings of science and medicine – how these drugs are pumping through my veins and arteries, hopefully attacking my ‘tumor monsters’, changing my blood and cell structure from the inside-out; and the side-effects so far are making me into the greatest Disney character my granddaughter Haley could wish for me – ELSA.

Haley, at almost four years old, has been loving, caring, gentle and truly compassionate from the beginning of “GiGi’s sick tummy”. She has seen the surgery scars, kissed the boo-boos, and gently rubs what she calls my “Pump-Lump” and says “that’ll make it better, GiGi”.  And I know she’s right.

“Let It Go”, Elsa’s big song from the movie “Frozen” was Haley’s favorite song this past year.  She doesn’t sing it non-stop anymore, but she can still sing the whole song on request.

The funniest part to hear her sing, as an almost-4-year-old, is the part of the song I’m relating to this chemo week; and I think it speaks to the way I’m dealing with treatment – and this cold-sensitive pre-neuropathy.

“My power flurries through the air into the ground.  My soul is spiralling in frozen fractals all around.  And one thought crystallizes like an icy blast. I’m never going back, the past is in the past!  Let it go!  Let it go, and I’ll rise like the break of dawn.  Let it go, let it go.  That perfect girl is gone.  Here I stand in the light of day.  Let the storm rage on.  The cold never bothered me anyway.”

“I’m never going back – the past is in the past”

FUNNY and at the same time SOBERING to hear those lyrics sung by a 3 year old.  But think –

if we ALL had that mind-set every day…

It’s how I’ve faced every day since D-Day (diagnosis day March 8).  Positive, full of hope and clarity, only looking forward – not bogging down in the what-ifs and whys.  And as we know,  Pity Parties are the loneliest, most depressing ‘social’ events, ever!

For those of you, who like me, take direction and comfort from Scripture, here’s a favorite one I have clung to for YEARS. – from Isaiah 41 – “fear not for I am with you.  Don’t be dismayed, for I am your God and will give you strength.  I will help you and hold you up with my right hand of righteousness.

And for those of you who like to read and pray in King James’ English accent, vs. 13; “For I, the Lord thy God will hold thy right hand, saying unto thee, Fear not; I will help thee.”

And, for those of you, like me, who need mental reinforcement from songs, hear this –

“I’m never going back, the past is in the past – Let it GO!….Let the storm rage on.  The cold never bothered me anyway!”

Fear not.  Let it go and GO forward in strength. Continue in prayer and positive attitudes.

Have a great week, friends!

 

Love,

Susan

 

Try this.  Wherever you are, stand up and do the following mini-choreography.  Start with feet parallel (together).  Take one step forward with your Rt. Foot, then step back with weight on your left, where you left it.  Step your Rt. Foot back behind your Left, transfer weight to that foot, then shift weight back to your Left.  That’s 4 counts.  (R, L, R, L)  Repeat sequence as long as you want.  You’ll notice you’re not moving ahead.  (And no, it’s not the Hokey Pokey, no turning around and shaking!)

Last week was that kind of week.  I’ve been on treatments for over 6 months now.  Everything has been working well and I have only minimal side effects.  Always staying positive – that is still the key.  Then, it hit.  We’re still not sure what “it” was, but a few hours after my Richmond chemo, I had chills and a fever that climbed to 102.  I had to spend Tuesday through Friday in the hospital for blood cultures and IV antibiotics.  Fever was gone right after I got to the hospital but WBC count dropped after I was admitted.  We may have caught a virus early on, but all tests came back negative.  The timing of all this meant I couldn’t go back to Louisiana for my niece, Emily’s wedding. The good news that week, was my MRI scans came back with good news of more (albeit small) shrinkage in the 2 liver tumors.  I get home from the hospital, that’s a positive step, but I’m weaker for a few days.  My WBC count is way up (thanks to the shots to stimulate that), but all my bones and joints hurt while they were working overtime.  Now, I’m back to feeling better, but a little wary of my upcoming next chemo on Tuesday.  If my WBC count is still up, I’m good to go.  It’s difficult knowing one little fever can ‘set me back’ a week.  SO, like this dance step, one foot forward, and then back. But, the important part of this is to keep moving.

Now, here’s a performing note about using this ‘choreography’.  If all you do with this ‘dance’ is the footwork, you’re going to look like your left foot is stuck in goo.  What makes this a powerful and iconic piece of choreography is the attitude and body energy required to make this worthy of a revolution.  With chest held high, shoulders squared and purpose and energy in fisted arms, this ‘marching in place’ becomes a powerful commitment and declaration.  “Tomorrow we’ll be far away, Tomorrow is the Judgement Day; Tomorrow we’ll discover what our God in Heaven has in store! One more dawn, One more Day, One Day More”!

Let us all decide to be “less miserable” this week.

I love you all, and thank you for your thoughts, prayers and love! J

Susan