Part Thirty-Three: Reprieve

            Late morning sunshine, blue skies, and cool breeze welcomed me to walk down the block.  After months of humidity-laden heat and sickly-feeling body, those few minutes following the sidewalk felt like freedom. 

            Later in the day, I found myself on the floor playing with fourteen-month-old Josiah.  He stood before me, tottering just a bit as he clapped his hands.  When I clapped my hands, saying “clap, clap, clap,” he burst out in laughter.  Grandma really is a funny playmate.

            I love feeling normal.  I never used to think about it much, the unconscious ease of doing daily stuff. 

            The first few months of chemotherapy took away the sense of feeling like myself.  It’s hard to explain when nothing feels right.  It’s more than the bitter, metallic taste that lingers in your mouth or the weird, sick feeling that defines your body.  It’s the indefinable but very real sense that somehow you are not the same, almost as if an alien has abducted your very self and replaced it with a counterfeit.

            But now, a reprieve.  I’d call it a combination of getting used to the impact of cancer, having a little break from some of the side effects from chemotherapy, and appreciating things that never occurred to me before.  As always—even before the cancer, during periods of wellness midst the fibromyalgia—I begin to take the reprieve for granted almost immediately instead of regarding it as a gift to be cherished.

            But, right away, reality returns.  Yesterday’s ache in my left knee and weakness in my legs, this morning’s stabbing pain in my left index finger and worrisome scratchy throat.  Back pain, fumble fingers, shoulder stabbing.  They are either side effects of Taxol or reminders of fibromyalgia.  Nothing too bad yet except the fear of everything getting worse.

            I, however, do not want to live my life in fear.  I’d rather live my life in gratitude.  Instead of dwelling in the uncertainty of what may yet happen, I’d rather dwell in the reality of the present, where Jesus helps me choose joy.

He who dwells in the shelter of the Most High

will rest in the shadow of the almighty.

I will say of the LORD, “He is my refuge and my fortress,

my God, in whom I trust.”  (Psalm 91:1)

Part Thirty-Two: The Art of Communication

            My fourteen-month-old grandson, Josiah, has a melodious voice.  Such happy emotion and inflection go into his incomprehensible baby babbling.  I get the feeling that he is speaking in sentences already; it’s just that we don’t understand the content.  Yet there is one particular word which he pronounces with great gusto.  He loves to say it, and he loves to have it repeated back to him.  This word does not seem to be connected to any object or meaning other than his pride in pronouncing it:  guck.

            On the other hand, three-and-a-half-year-old Joelle has a lot of information to convey. She likes to repeat important facts and relevant questions as much as she likes to keep everyone current on what she is doing, thinking, pretending, and feeling.  There are two things I can count on every time I see her.  She will come up to me, carefully touch my turban, and ask, “Grandma, where did your hair go?”  Then, she lifts my head covering with a finger, touches the fuzz on my head that has never fallen out, and proclaims, “You have tiny hair!”

            Benjamin, at seven, prefers action communications.  Ever hoping to watch a video, he slyly smiles at me and hands me the remote.  When he wants to go home with me, he grabs my hand and escorts me to the front door.  And when he wants me to sing his favorite song, “The Wheels on the Bus,” he personalizes the sign for “please”:  instead of rubbing his palm across his tummy, he rubs it across mine.  When he was a baby, he went through a period of time in which his favorite vocalization was “blah, blah, blah.”  Oh, and he also roared like a lion when I picked him up.

            It makes me happy that my grandchildren like to communicate with me.  I also like to remember how my own two children expressed themselves when they were little.  Joseph had his own unique gibberish that sounded like rapid-fire Chinese.  Dana, on the other hand, was precise in her communications, using fully understandable sentences at an early age.  There was a single exception, one made-up word that served a dual purpose.  “Ma-mu,” or perhaps I should spell it “Ma-moo,” was her word for apple and for mother’s milk.

            This second week out of the hospital has been a rather long one because I’ve kept away from my family due to Dana’s nasty cold.  I miss my grandkids mightily.  It’s also been entirely too long since I’ve had the older two over to my house—all summer, in fact.  What I want is enough energy to have them over one at a time.  Benjamin could jam on the piano, go grab his See ‘n Say out of the toy room, and take it to the kitchen where he loves to sit on the floor and croon.  I long to cuddle up with Joelle on the couch to watch a silly episode of Peppa Pig on my computer, followed by looking through my jewelry box and trying on necklaces and bracelets.  Then I could cut some frozen grapes in half while she gathers the necessary plastic lids and containers for our fruit-eating.  The plastic outnumbers the grapes, but I trust that there is a three-year-old logic driving her routine.

            However, having my grandchildren over, even one at a time, might be delayed for some time.  Already, I’m experiencing the expected side effects of Taxol:  fatigue, muscle and joint pain, and peripheral neuropathy.  It’s pretty much like having a fibromyalgia flare.  It’s discouraging to think about the next ten weeks of treatments, because chemo side effects tend to worsen as time goes on.  Oh, well.  At least this is familiar territory, and because today I spent several hours collecting a week’s worth of grandchildren hugs, I will be fine until tomorrow.

Part Thirty-One: Sicker Than I Knew

I was pushed back and about to fall,

but the LORD helped me.

The LORD is my strength and my song;

he has become my salvation.

(Psalm 118:13-14)

            I did not know how sick I was.  True, I wondered if I could get out of bed.  True, my fever was back up over 100 again.  And, true, I felt horrible.  But I did not know I was short of breath.  And I did not know I had pneumonia.   

At Jane Phillips that Friday night, I opted for a wheelchair to get me from car into ER.  My daughter and I waited for what seemed a long time, but once the intake person found my blood oxygen level to be a mere seventy, I got wheeled back into a cubicle and hooked up to oxygen fast.  Then the wheels of ER turned more slowly, and it wasn’t until 3 a.m. that I was loaded up in an ambulance to take me to the Oklahoma Heart Institute ICU at Hillcrest.

This was not how I had planned on spending Labor Day Weekend, but I was in good hands.  The staff was amazing, providing excellent care, professional competence, and loving compassion.  Antibiotics and steroids, tests and more tests, and breathing treatments filled each day.  On Tuesday, I was moved from the cardio ICU to the ninth floor oncology unit and no longer needed oxygen.  On Wednesday, the physical therapist got me up and using a walker.  On Friday, I was discharged. 

So here I am at home, grateful to sleep in my own bed without the interruptions of blood draws, breathing treatments, and vital signs checks.  Earlier this summer, I often felt like my home was a prison.  Now, after three days in ICU and four days in a regular hospital room, my home feels like freedom.  Breathing on my own, walking on my own, and regaining strength are precious gifts I did not know that I should cherish.   

I never knew it was possible to be so very sick and not know it.  It makes me think of how spiritually sick and lost we can be without knowing it.  It makes me more grateful than ever before that Jesus is our great physician.  He gave his life for us.  Not only do we have the promise of eternal life, but we can have abundant life in the present, too, no matter our circumstances. 

You are my God, and I will give you thanks;

you are my God, and I will exalt you.

Give thanks to the LORD, for he is good;

his love endures forever.

(Psalm 118:28-29)

Part Thirty: 101.3 and it ain't no radio station

            Finally, after waking up every hour all night with body aches, at 4:45 a.m. I started to wonder if I had a fever.  I did:  101.3.  I took the Levaquin first and then called the triage nurse.  And then took a Tylenol #3 (I don’t have any of the regular stuff) and a muscle relaxant and went back to bed.

            This is day five with muscle spasms of the back and legs.  It started before my chemo on Friday and has not let up much since.  I move very carefully.  Sometimes all movement is excruciating, and sometimes it is not.  I can sit at the dining room table or at my computer.  Last night I figured out that with the heating pad I can sit in the recliner for a while.  I am not having fun.

            But late Wednesday morning I was able to bend enough to finish unloading the dishwasher and fill it back up with dirty dishes.  That was not necessarily a smart move because my back is starting to spasm again. 

            I do not understand what is going on.  Is this pain the fallout from degenerative disc disease or from chemotherapy?  What caused the high fever?  When am I going to feel better?  My world is shrinking again.  And tomorrow, Friday, is another chemo day.

Part Twenty-Nine: Taxol Day #1

            Holly and I arrived at OCSRI-Tulsa for my nine a.m. appointment.  Since school has started up again and my son-in-law is back in the classroom teaching, daughter Dana can no longer take me to appointments.  I am so blessed to have friends that jump at any opportunity to help me.  If there is a silver lining in the cancer cloud, it is friends:  acquaintances become trusted friends and trusted friends become even closer than before.

            In the lab, I was pleasantly surprised to have one of the nurses from my very first treatment.  It was nice to talk with her and find out the latest concerning her seven-year-old twins.  I even made sure to read her name tag, but already I have forgotten her name.

            From the lab, Holly and I made the short trek to the doctor appointment waiting area.  It didn’t take long before my name was called.  My oncologist had a medical student with him today, and after introductions, Dr. Moussa said with a smile, “Two doctors for the price of one!”  I rather like it when he has a med student because he then gives a brief summary of my case, most of which I understand.  Medical repetition is an essential learning tool for me.

            Both lab and doctor cleared me for today’s chemo.  We waited the usual twenty minutes or so in the treatment waiting room before being called back.  For the first time, I was placed in a “double.”  Most of the cubicles are set up for one patient; a “double” is set up for two patients.  I had my choice of recliners.  Then I was pleasantly surprised to see that the nurse who had done my blood draws in the lab earlier was also going to be my main nurse for treatment!

            She hooked me up to the first IV drip—a steroid/anti-nausea combination—and not long thereafter an older gentleman was directed to our cubicle.  He sat down in the other guest chair instead of the other recliner.  I don’t remember exactly how, but Holly included him in our conversation and he shared his story.  His wife died from cancer twelve years ago, and now he has cancer in several organs.  He explained, though, that he had felt led to just do injections instead of IV chemotherapy.  We talked about our faith in Christ.  He has been a music minister since 1958, and the peace and love he has for the Lord simply exuded from him.  It wasn’t long until he was called away to receive his injection, but those few minutes talking with him were the highlight of the two hours in the treatment room.

            I remembered to have Holly take my picture and to stop everything to pray just before the chemo drug, Taxol, was hooked up even though I was more than a little drowsy and spacy from the IV Benadryl drip.  I dozed for a good part of that last hour.

            Earlier, I had been given my Bartlesville and Tulsa dates from the scheduling office, so all that remained was a stop at the in-house pharmacy for a refill of one of my anti-nausea drugs.  And then the drive home, pleasantly filled with conversation and laughter.  I noted the relative absence of lower back pain, which was especially wonderful after what had happened this morning when I got up—the most intense lower back pain I have ever experienced.  Every movement caused excruciating pain:  walking, reaching out or up or down, turning, sitting.  I took a pain pill, which started to help a little by the time Holly arrived, but I could not carry my bag and getting into her van was challenging. 

            I’m thinking that seeing an orthopedic doctor is in my near future.  Hopefully, a physical therapist, too.  At least I already know what is wrong from earlier imaging:  degenerative disc disease.  In the meantime, I’ll gradually increase my walking, stop picking up anything heavy, avoid hours in my recliner, use the ACE ice pack, and carry on.

Part Twenty-Eight: TMI

            Too much information.  Too little faith.  I was beginning to feel like Wonder Woman earlier this week (how quickly pride sneaks in) and now I’m the one that needs rescuing.

            The cancer support group serves a good purpose, but unfortunately one of the side effects is learning about post-cancer treatment health issues.  In other words, things I really did not want to know:  neuropathies, sleeplessness, post-surgery pain, radiation damage, and depression, to name a few.

            Adding in my heart’s desire to NOT do radiation, I did some preliminary research on cancer protocols for stage IIIb breast cancer in general and survival rates for triple negative cancer in particular.  Suddenly fear reappears. 

            With these extra two days off the chemo before starting the twelve-week regimen on Friday, I am feeling better than I have since treatment started at the end of June.  Doctors, nurses, and cancer survivors alike have reassured me that Taxol is much better tolerated than the Adriamycin and Cytoxan of the first two months.  However, the side effects sound all too familiar:  fatigue, achy muscles, and peripheral neuropathy.  All are features of fibromyalgia.

            I’ve never been good at the power of positive thinking, and right now all I can think about is if those chemo side effects will be intensified in me due to the fibromyalgia.  I want to believe that they won’t, but I’m not convincing myself. 

            But wait, there’s more!  (Suddenly those old barkers for TV product specials come into mind.  While I’m not about to sell you a bill of goods, there is something better to buy into than positive thinking versus fear.)

            There is the promise.  At the very beginning of this cancer journey, I told the Lord I really didn’t want to go on it.  His response was peace.  Time and again, Jesus has reassured me that he is carrying me through.  All I have to do is rest in him and take each day as it comes.  He made no promises about how difficult or easy the journey would be, but he promised he would see me through.  

            Ah, I feel the peace filtering through and dissipating the fear.  It’s true that I am not now nor ever will be Wonder Woman, but I don’t need to be.  Jesus, the divine superhero of the universe, is all I need.

Part Twenty-Seven: Shower Revelation

            “That’s it!” I exclaimed.  “Thank You, God!”

            There is something about showers and musing.  Under the steamy, refreshing flow of water—and who would have guessed how luxurious water streaming over a newly bald head feels—my mind wanders and ponders.  Well, after six weeks, my baldness isn’t quite so new anymore, but still the water feels good.  And there goes my mind wandering again.  I guess it’s not limited to showers.

            Anyway, after my shower I got ready for the day and then grabbed my NIV Study Bible, which has a pretty good concordance.  As is the case 98% of the time, I knew what I was looking for but didn’t know exactly where it was.  The entries under “comfort” yielded the result.  Later, after church, I spent some time on BibleGateway.com, reading the verses in various translations until I found the one that, in my humble opinion, said it best.  The New Century Version won the prize this time:

Praise be to the God and Father of our Lord Jesus Christ.  God is the Father who is full of mercy and all comfort.  He comforts us every time we have trouble, so when others have trouble, we can comfort them with the same comfort God gives us. (2 Corinthians 1: 3-4)

            I have heard other Christians talk about their “life verse” before.  I don’t know exactly what they mean by it, but I know what I mean.  And 2 Corinthians 1: 3-4 is mine.

            Hopefully, it is what I am doing at this very moment, writing away at the keyboard.  My heart’s desire is to share with others the hope and encouragement that God so graciously and generously showers on me. 

            Sometimes I bewail the fact that I am neither a big-picture nor detail-oriented person.  I fall somewhere in-between, which can feel like a pretty useless place to be.  Occasionally, I see the big picture, but have no idea how to get there; the details elude me.  I’m no vision caster, nor am I a vision implementer.  Instead, I operate in the present.  The here and now.  Today, minute by minute. 

            And now I am going to accept that as a blessing because it puts me in a place where I can live out what God has for me to do.  That is, be a comforter.  Share my present joys and trials with others to encourage them.  Point toward the God of all mercy, whose generous and limitless love showers down on every single person in this world, whether they recognize it or not.  Include the ups and downs, the doubts and fear and pain that are part of everyone’s journey. 

            Writing is not all of it.  Sometimes I am blessed to come alongside someone and listen to their story, really hear them.  They don’t need to hear my story; they need someone to fully engage with their story.  It’s an honor to be trusted to listen.  People usually do not want advice; they want to be heard and loved. 

            I’m the same way.  When I find that someone has read my story and it has touched them, I feel heard and loved and more than that:  grateful to God that my telling can bring His comfort.