Part Twenty-Two: When I Am Weak

He gives strength to the weary and increases the power of the weak.  Even youths grow tired and weary, and young men stumble and fall; but those who hope in the LORD will renew their strength.  They will soar on wings like eagles; they will run and not grow weary, they will walk and not be faint.  (Isaiah 40: 29-31, NIV)

            There are times in which I do not think I can stand this cancer treatment another minute.  Like during the last two weeks when the exhaustion never let up till the day before the next chemo appointment.  But then, God always shows up to encourage me and remind me that I can trust Him.

            He shows up in a variety of ways.  One is through family and friends.  My daughter checking in with me every day.  My neighbor rescuing me in my “out of cold brew coffee day.”  The lovely family dinner Thursday night (July 28) to celebrate Josiah’s first birthday.  Cards, texts, emails, Facebook comments, phone calls, errands run, food brought, lawn mowed, visits:  all of these cheer me immensely. 

            And then there was Tuesday, July 26, when I had a whole day of feeling good.  I went to K-Mart and to Billie’s Health Food Store that morning to pick up various items.  It felt so good to drive my car again and do something normal.  After napping and resting for the afternoon, I went to the Women’s Cancer Support Group at Hopestone.  There were ten of us total, some current cancer patients, other cancer survivors.  We each shared as much or as little of our stories as we wished and we learned from each other.  There were a few tears and a lot of laughter.  At the end, I felt encouraged, especially by the presence of several stage III breast cancer survivors (one 10 years and the other 25 years, I believe).  From there, I went over to visit my family across the street.  I had not seen the grandchildren in a week, and it was a lovely reunion.

            And then, the next day, Dana and I headed off in the rain for my OCSRI Tulsa appointment:  blood draw, consultation with Dr. Moussa’s nurse, Deb, and chemotherapy.  My daughter is such good company; plus, she is my determined advocate and “rememberer” of all the things I want to do but tend to forget, like having my picture taken in the treatment room and stopping everything to pray with me and the nurse before the first of the two chemo drugs.

            After a long time with Deb discussing my two weeks of exhaustion and one day of confusion (which Dana documented quite well), we came to a decision:  cut the chemo dosage by 20% this time and go in to see her next week so she can evaluate in person how I’m doing.  I finally remembered to ask, since no one had volunteered the information up to this point, what stage my cancer is.  She was a little surprised I didn’t know, checked the front of my chart, and said, “Stage IIIb.” 

            From the consultation we headed to the treatment room.  We were directed to a cubicle and got settled in for the three-hour infusion.  Each time we have been in a different section of the room, and each time we have had a different nurse.  All of them have been exceptional.

            I knew we were in for an extra treat when Wednesday’s nurse took special note of my prayer quilt and started sharing about Christ.  As she got things set up, she talked, looking straight into my eyes and sharing her own experiences of healing and comfort.  Her smile radiated love and joy.  As Dana and I listened to her and shared some of our faith as well, we were buoyed up by the Holy Spirit.  Our nurse had plenty of other patients to attend to, and every time she returned for the next task in our cubicle, she continued to share.  There was nothing off-putting about it.  Her words, her smile, and her joy brought peace.  One of the scriptures she talked about was Isaiah 40:31. Near the end of the treatment time, she asked if she could give me a little book and a small square quilt made and prayed over by her church. 

            Safely arrived at home an hour and a half later, I bid good-bye to my sweet daughter and silently prayed for her to have strength.  While I would retreat into my quiet living room to rest, she would go straight from being my helper for the day to tending to her family’s needs. 

            The mailman and someone else had left their offerings on my porch.  There was a box, two packages in the door, a WalMart bag with a wrapped present hanging from the door, and a greeting card in the mailbox.  The box had the sharpies disposal unit I had ordered for my Neulasta pumps.  The packages were for my son’s birthday next week, and the card was from my Sunday School class.  The wrapped present was a devotional coloring book.  Joan’s note inside said she would be praying Isaiah 40:29-31 for me this week. 

            The aftermath of Wednesday’s treatment is hitting harder today (Saturday).  But when I am weak, He is strong.

Part Twenty-One: Off the Shelf

Tuesday night, lying in bed exhausted me.

            Wednesday afternoon, the simplest instructions confused me.

            Thursday evening, I was a little less exhausted and a lot less confused.

            Friday night, I realized that during the course of the day I had four phone conversations of over fifteen minutes each—something I had not had the energy to do the day before.

            And Saturday—today—I am doing a load of laundry.  How’s that for progress?  Maybe by tomorrow I will have the energy to start reading a book.

            And still, and yet, I do not feel like I have been put on the shelf. 

True, I’d rather be healthy and full of vigor, being with people, serving at church and The Journey Home, spending time with my grandchildren.  But let’s be honest.  It’s been twenty years since I was healthy and full of vigor.  I’ve had oodles of practice at living a quieter, gentler pace.  I’m well acquainted with prioritizing my activities.  For instance, I didn’t do things that caused delayed pain unless they were things I really wanted to do.  Hence, wrinkled were my clothes and dusty was my house.  But I sat on the floor with my grandkids and held the baby.  And played my flute and wrote at the computer. 

I’ve had to stop just about everything for a while here, including grandchildren time and flute time.  But the key words are “for a season.”  Sometime soon, my white blood count will rise.  Next year at this time I will be a cancer survivor instead of a cancer patient.  In the meantime, when my life pace slows to the basics--eat, drink, rest, sleep--I still have the joy of writing.  Yes, it takes quite a bit of energy.  But I feel it is energy spent wisely because writing refreshes me and brings encouragement to others. 

Now—you might have guessed it—naptime beckons.  But I’m still off the shelf.

Part Twenty: Down for the Count

            Something didn’t seem right.  I was getting more tired every day.  My gums were bleeding.  My teeth hurt when I tried to chew. 

            So first thing Wednesday morning, I called the triage nurse at OCSRI, hoping for some help.  She suggested getting bloodwork done.  Exhausted, I whined right back, “But I don’t think I can handle coming to Tulsa today.”

            That is how my cancer care shifted seamlessly to the OCSRI satellite office in Bartlesville.  Now I only have to go to Tulsa for the appointments when I see my oncologist.  I can see his nurse practitioner here in Bartlesville and do my chemo here.

            The lab results were startling.  Everything looked good except for my white blood and neutrophil counts, which had dropped to virtually nothing.  Such a precipitous drop so early in the chemotherapy regimen is unusual, especially since I receive the white blood cell-boosting Neulasta injection the day after each treatment. 

            Dana made the follow-up appointments for me at the front desk while I sagged onto a bench.  I did not have the capability to process information.  I listened to everything through a haze as exhaustion enveloped me.  Two blood work appointments next week, followed by nurse practitioner appointment Friday.  Clearly, no chemo next week.

            The treatment for neutropenia is to rest and stay away from germs.  Also, be careful not to get a scratch or cut.  Because my mouth is so tender, stay with soft foods.  Be very gentle when brushing my teeth.  Rinse mouth every two hours with the water/baking soda/salt solution.  Limit contact with people.  Wash my hands often.

            Around nine o’clock Wednesday evening, feeling awful in every way, I suddenly remembered I was also supposed to keep track of my temperature.  The magic number, about which you call the triage nurse immediately, appeared on my digital thermometer: 100.5.  Sure enough, the nurse said to start the antibiotic prescription, which I had received as the standard “just in case you need it” after my first treatment. 

            My temperature has stayed normal today, which evidently for me is in the 96-97 range.  I’ve been taking it every couple hours.  I feel less sick than I did yesterday.  I’ve spent today alternating between recliner and bed.  I am an expert in the art of dozing, and the peace in my soul still prevails.  God is good.  He’s got the details.  All I have to do is rest.

            

Part Nineteen: And A Word From Our Sponsor

            Rancor is what I see in social media and news feeds.  Violence, shootings, rants, raves.  My side is right; your side is wrong.  Anger, shaming, political posturing.

            Love is what I see in the cards that grace my piano top; love is what I see in the generosity of family and friends; love is what I see in spontaneous acts of kindness.  Love is in the meal brought by a friend.  Love is in a ride given.  Love is in a hair stylist as she volunteers her time to shave my head.

            And wisdom is what I see from two authors whose eloquent words grip my soul:

            Love from the center of who you are; don’t fake it.

            Don’t hit back; discover beauty in everyone.

            Forget about deciding what’s right for each other.  Here’s what you need to be concerned about:  that you don’t get in the way of someone else, making life more difficult than it already is.

            Help others with encouraging words.

            Cultivate your own relationship with God, but don’t impose it on others.

            Strength is for service, not status.  Each one of us needs to look after the good of the people around us, asking ourselves, “How can I help?”

            Eugene and Paul, collaborating across the centuries, remind me what is essential in life.  Paul wrote the Greek; Eugene transposed it into twentieth century American English.  I copied my pink highlights from Romans 12-15.

            No matter how full or empty your schedule, no matter how influential or invisible your life, no matter how few or how many you impact each day, take heart in today’s words from our sponsor.  They are for all of us.

            

Part Eighteen: Hair, Hair, Everywhere

            At first it was kind of fun:  run my fingers through my hair and out it would come.

            Then it got annoying:  wake up in a cloud of hair, use a few lint roller sheets to clean off my pillow, and go back to sleep.

            And finally, it got sickening:  globs of hair in the shower, more hair than I ever realized I had.  But it’s almost gone now, and in the space of three days I officially look like a cancer patient.

            Trying to get rid of the last of it (yes, now I wish I had simply had it all shaved off last week), I vigorously dried what was left after shampooing this morning.  I even nabbed a pair of scissors, but as I held out sections to snip, the hair simply pulled out.  So now I have wisps.

            I’m not feeling up to going to church this morning.  Instead, I am washing blankets and sheets.  And adjusting to being bald.  And, incidentally, not feeling too whippy.

            The weekend after chemo is rough.  Lousy, icky, sickly feeling—but at least without queasiness since I have a better idea how soon to take the anti-nausea meds.  It gets harder to drink fluids.  I eat because I know I should, though I sure snarfed down that Wendy’s burger and fries Joan brought over at my request.  No physical energy, no emotional energy.  Doze, nap, read, try to pray, listen to music, stare off into space.  And then repeat. 

            By tomorrow, I should feel well enough to leave the house and get these last wisps shaved off.   Then I can put away the lint roller and the shampoo, tend to my tender scalp, and get used to the new me.  It will be a better day.

           

            

Part Seventeen: An Evening to Remember

            The evening before my second chemotherapy treatment, I accompanied my daughter for a very special evening in Tulsa.  With my chemo class at 2 pm, her dinner and small group class from 5-10 pm, and my treatment the next morning at 7 am, it seemed like a good idea to stay overnight in a nearby hotel.  It turned out to be one of the best evenings of my life.

            The group of eight women—four class members, the teacher, two ministers, and me the guest—met at a fine dining Italian food restaurant.  The appetizers, food, and shared bites of dessert were scrumptious.  The conversation was filled with laughter and stories of God at work.  But what captured my attention the most was the way the group reached out to our server.  I’ve heard my daughter tell of such things before, but I had never experienced them.  When there was a lull in service and our server had a few minutes, Myong asked if Dana could pray for her and speak a word into her life.  “Oh, yes,” she said.  A little later, two of the other women spoke to her as well.  Each one had a pertinent discerning (hold on to your hats!) prophetic word specific to her life, which she gladly received, and each one prayed briefly for her.  What a way to bless your server, besides leaving a generous tip, that is!

            It’s true.  The people my daughter hangs out with operate in an alternate universe to the normal, workaday world.  They have overcome their fears of stepping out to bless other people with God’s love in original ways.  I learn so much from them.

            From the restaurant, we drove across Tulsa to Jerry’s place of business.  There she had the front room set up for the video class she has facilitated for them these past two years.  Actually, the class was supposed to be completed in one year, but Jerry’s unexpected round of colon cancer surgery, gall bladder surgery, chemotherapy, and then a broken foot interrupted.  So tonight was truly a special milestone.  We started with recorded contemporary praise and worship music.  Here I confess that I am only very slowly warming to that style.  I worship best to traditional hymns and light rock Christian from the 1970s. 

            And then, communion, in a manner I had never before experienced.  The bread was a baked loaf in the shape of a lamb, representing Jesus.  There was olive oil and honey with which to drench or dip the bread.  And there were small goblets of grape juice and milk to drink.  We shared this little meal with laughter and celebration.  Afterwards, Jerry’s daughter, Roxanne, shared a sermon on Zechariah 3.  I should have recorded it.  There were so many nuggets of soul-piercing truth she gleaned from that chapter.

            The graduation ceremony (which I will not attempt to describe here—suffice it to say that it was both meaningful and totally original) ensued, and each of the four women who had completed the course received her certificate.  Prayer and prophetic words followed.  Each of us was prayed over individually, with Roxanne and Cary being the lead ministers.  Every single person there received beautiful and encouraging direction and promises from God’s Word.  It was a time of tears and joy and a profound experience of God’s love.

            I want to share my experience.  The focus of the prayers and words were concerning my breast cancer.  Roxanne’s first words were a declaration:  there will be victory and complete healing.  God will be with me in each step of the process and direct my doctors.  I have a long life ahead.  Jesus will not let this enemy attack of cancer cut my life short.  I wept tears of joy and relief.  There were more words from Cary concerning healing, and Roxanne read all of Psalm 91.  I received.  But my turn was not quite over.  Jerry had what she called a “silly story” that she felt compelled to share. 

            She had been driving back home on a Sunday from visiting her sister in Nebraska, I think, and was very tired from too many late nights of conversation and very little sleep.  All at once a deep fog fell, the type of fog in which you cannot see more than a few feet.  She prayed.  She did something I would never have even thought to do and commanded the fog to lift in the name of Jesus.  It did not.  She got mad.  She tried again.  Nothing happened.  She was discouraged.  The fog did not lift, but a car suddenly appeared and passed her.  She followed its red tail lights for all the rest of the many miles home in that deep fog. 

            To me, the lesson was clear.  This cancer journey is going to be a long, foggy journey.  The only way through is to watch the light that leads me, keep following, not worry about all I cannot see.  Jesus will get me home.

            And, by the way, I had a wonderful thing happen the next morning.  When the nurse asked about my pain levels, I had the distinct pleasure to answer I didn’t have any pain (an unusual situation for me).  It felt like a benediction on the experiences of the evening before.  So if you ever hear me babbling on about alternate universes and following red tail lights, bear with me:  it’s my new shorthand for God’s amazing peace and direction.

Part Sixteen: Lost in a Synapse

            Perhaps sifting through old files jogged the memory. Or maybe it got jiggled out through general ponderings; I don’t remember.  And it is not really a memory of any specific moment—rather the first part of a sequence I had forgotten.

            Now that I have piqued your interest, I can bore you with the memory.  It’s this:  when I suddenly started experiencing major fatigue and unpredictable pain in 1996, I muddled along for a long time thinking perhaps I was in perimenopause.  A couple years later, extremely dry eyes joined in with the aches, pains, and general malaise.  I took my complaints to my family doctor.  To his credit, he really listened and did not call me a hypochondriac.  Instead, he did the eighteen trigger point exam for fibromyalgia.  Because the pain was not excruciating, I said it didn’t really hurt.  That, plus my really dry eyes, led to an initial diagnosis for Sjogren’s Syndrome.  Then in 2004, I finally saw a rheumatologist, who, to my surprise, diagnosed me with fibromyalgia.  The diagnosis changed little about my treatment, though, and I continued to live with pain and fatigue cycles that, like the Energizer Bunny, never stopped.

            Okay, the memory about the perimenopause period (pun intended) was supposed to be the whole thing, but then I got on a roll.   I did get kind of stuck on the word “hypochondriac” because I could not remember it.  Finally, when I remembered the first two syllables but not the rest, I realized I could turn to my trusty dictionary and look up “hypo” and thus find that elusive term.  All of this process illustrates so well the title that popped into my brain earlier today: “Lost in a Synapse.”  Maybe these first 300+ words have illustrated for you the mazes of my mind.  An impulse from one nerve cell gets fired across to the next cell, only to sputter out in between or veer off to the wrong destination.  That’s how my fibro brain limps along.

            Memory glitches, watching my mother deteriorate and eventually die from Alzheimer’s disease, and plain old fear have worked my worry synapses quite efficiently, though.  Naturally enough, the one thing I never thought to worry about or fear has become the thing that has come to pass:  triple negative breast cancer.  It goes to show you what a waste worry is. 

            Now I am told that I can blame any memory glitches on chemo brain for the rest of my life, which, added to fibro brain, means I’m off the hook forever!  Instead of worrying every time my synapses misfire, I can just shrug it off and say, “oh, well.” 

            But while I’m on the topic of fibromyalgia + cancer, and while I’m rambling anyway, I want to share some miscellaneous observations from the past week and a half.  The first three days after my first chemo session, I was puzzled by the lack of back pain and right arm pain despite all my recliner-sitting and computer/Kindle use.  Normally that combination is deadly.  I felt genuinely lousy and constantly queasy (next time I’m just going to take the anti-nausea pills instead of thinking it’s not so bad) but remarkably pain-free.  Then suddenly, about day four when I was sick and tired of computer and Kindle and recliner, the pain kicked back in with a vengeance.  Today, I finally understood why:  before the chemo drip was the steroid drip.  Steroids wipe out pain due to inflammation. 

            And as the IV steroids wore off, the mouth sore I had before chemo got way worse; plus, a few more sprouted.  When I called the triage nurse to ask for something to help the mouth sores, she was a little puzzled I was experiencing this particular chemo side effect so soon.  I told her about my already dry mouth from fibromyalgia, and she called in a compound mouthwash prescription.  It is the most expensive bottle of mouthwash I have ever purchased, but it is well worth it.  There was immediate relief after the first dose.  Nystatin, lidocaine, and steroids work wonders.

            Let’s see . . . we’ve talked about brain and pain already.  The next biggie?  Fatigue. It really is to my advantage that I have extensive fatigue experience and that I don’t mind taking naps.  In the past I sometimes wondered if I was just being lazy even though I knew that if I pushed too hard, bad things would follow.  The chemo fatigue comes on more suddenly and forcefully than the fibro fatigue normally did.  Fortunately, I am used to listening to my body and obeying its signals which, by the way, led to my purchase, six years ago, of a high quality, very comfortable memory foam bed.  Every day, I thank God for it.

            Okay.  If you made it this far, you are to be congratulated.  I’ve been in a rambling sort of writing mood, and I thank you for staying with me.  There has to be a clever way to end this ramble, but suddenly I am at a loss for words.  Or maybe lost in another synapse.

           

 

           

           

           

            

Part Fifteen: Look Up, Not Ahead

            Welcome words of advice from Dwight, whose wife Julie continues recovery from her long and winding cancer journey were shared with me a week or so before I started treatment: “Look up, not ahead.”  How true these words are for navigating any stormy journey.  Mariners of old looked up for guidance from the stars.  I look up for guidance from Jesus, “the bright Morning Star” (Rev. 22:16, NIV).

            Before chemo began, I found it easy to look up because God had given me such peace through the weeks of waiting, diagnosis, and testing.  I felt his presence buoying me up.  I kept “looking up” through worship, prayer, praise, Bible reading.  Maintaining focus (well, most of the time) on my Savior instead of my disease seemed natural.

            It’s harder now.  Just a week into chemotherapy treatments that will stretch out over the next four to five months, I am prone to looking around and ahead at my difficulties.  True, my stomach has improved from queasy to uneasy since the first infusion a week ago today.  But suddenly it is harder to drink the huge amount of liquids needed to flush my system.  I am already weary of the bitter metallic taste that is my constant companion.  I feel scared and discouraged as I face this disease and its treatment cycles.  I’m tired of my bodily discomforts.  I was used to the ebb and flow of fibromyalgia.  Cancer and chemo are much harder.

            I tire more easily than before.  There’s this weird head zap that sometimes strikes, putting me off balance for a split second.  However, unlike last week, I am doing errands and getting out of the house for brief spurts of time—and, oh, does that help assuage the cabin fever and boredom.  Heartburn is worse.  My back hurts from sitting too much.  I’m walking more—if you count short grocery shopping trips.  I will gradually build on those outings and increase to actual walking exercise, but nothing happens fast.  Slow and steady does it.

            So, yes, I’m guilty of looking ahead.  It is easy to get stuck there. I want to look up instead: pray when I don’t feel like it, worship when I feel utterly earthbound.  Practice joy, sing praise.  At minimum, read a few psalms every day.  Nourish my spirit in God’s Word and in good books.  Yesterday I started reading John Ortberg’s, If You Want to Walk On Water, You’ve Got to Get Out of the Boat, and I am enjoying his profound insights that are, more often than not, delivered with punches of humor.

            I was in danger a mere week or two ago of thinking myself pious, somehow “above” difficult times.  It felt good to be victorious.  I was proud of my humility.  But now, hey, I’m human.  Cancer is very hard.  There is no way I can handle this even with the loving help of family and friends.  Fortunately, I don’t need to.  Looking up, I experience vision that is not my own to navigate by the bright Morning Star.

            

Part Fourteen: I Did It!

            Waking up feeling close to normal this morning, I decide to do it:  leave the house after three and a half days at home. 

            But first, there is a bold new action to take:  downing my regular morning medications with breakfast instead of spreading them out throughout the day to spare my stomach.  That feels daring.

            It feels so good to drive my car, so I thank God all along the way.  The streets are rather deserted at 9:30 am this morning of July 4^th.  I pull into the CVS pharmacy drive-through to find it does not open till ten.  No problem.  The more important stop is Food Pyramid.

            A front parking space opens up as I enter the lot, and I somewhat slowly and shakily walk on in the store.  I can tell my energy is limited, so I head straight for the produce and find the surprise bonanza:  Washington sweet cherries on sale, fresh blueberries, and ripe peaches.  The zucchini looks anemic compared to the three I ate yesterday, so I head to the health food section.  Jackpot!  $2 off stickers on some $2.49 single-size yogurt items.  Two Noosa strawberry and rhubarb yogurts and four coconut milk plain yogurts total $3.00 instead of $15.  I pick up some organic lemonade made with fruit juices and a couple loaves of sesame seed Ezekiel sprouted grains bread.    And then I am suddenly and completely done. 

            So I put off CVS until another day and drive home.  

Part Thirteen: A Whole New World

            Why should a line from a Disney tune present itself as I ponder a title for part thirteen of my cancer journey?  My “whole new world” is quite different than Ariel’s in The Little Mermaid, but it is whole and it is new to me.

            Let’s start with chemo.  At OCSRI, the chemo room is a huge space divided up into cubicles, each one with a reclining chair for the patient, a chair for the friend or family member, bench space, and the requisite medical equipment. Wednesday was busy, but maybe all the days are busy there.  The sheer number of people being treated for cancer at this single clinic in Tulsa is a shocker to me.  Yet the clinic is a cheery and hopeful place because of the wonderful people staffing it with such professionalism, kindness, and compassion. 

            I received many comments and compliments on the prayer quilt Barb made for me.  It was nice to drape it over the warmed blanket on my lap.  There was a lot of preparation to be done before I got hooked up, but before the first drip started, my daughter was true to her word.  She invited the nurse to pray with us.  Nurse, daughter, and patient held hands as daughter prayed.  It was a special moment. 

            By the time we left four hours later, I had received two different anti-nausea drips, my first chemo med (nicknamed “The Red Devil”) and the second chemo med which had no nickname. 

            Then came Thursday, time for the muga heart scan, which normally is administered before one’s first chemo treatment, but scheduling had not allowed the proper sequence.  It was a breeze, and my heart passed with flying colors.  After that, Mona and I headed up to the chemo room to have the Neulasta automatic pump attached to my tummy.  In exactly 27 hours it would deliver the immune-boosting dose of medicine to keep my white blood cell count from dropping too low.

And it did, right on time Friday afternoon.  Because of the pump and because I was tired, I stayed in my pajamas all day to rest, drink, and eat nutritious mini-meals.  It felt really good to shower and get dressed this morning (Saturday) even though I don’t feel really good.

            Admittedly, today and tomorrow has me nervous.  The 72-hour anti-nausea coverage from Wednesday wears off this afternoon.  I am hoping beyond hope that I will not even need to use the two medications I have on hand for nausea, but very glad I have them ready.  I’m being careful to keep drinking lots of fluids and pay close attention to how I’m feeling.  Eating small snacks instead of full meals is easy.  In fact, it is about time for another snack.    I’m pretty tired from this forty minutes of writing, so adios for now.  You’ll get the slightly edited version of this rough draft later today.  I’m going to enjoy some frozen fruit and Greek yogurt and maybe, just maybe, drink a little coffee to ward off a caffeine withdrawal headache.  Like I said, it’s a whole new world.